Congenital HI Kids .org

2009 HI 5 Kids Hyperinsulinism Fund

2009-12-04T18:18:00.000-08:00

Christmas 2009

The HI Five Kids Fund for

Cook Children’s Medical Center

F - Finding help forfamilies effected byhyperinsulinism

I - Increasing awareness of

hyperinsulinism

V - Victorious treatment for children with

hyperinsulinism

E - Educating both the public and parents

of children that have hyperinsulinism

Thank You For Your Christmas Donations .

We donated 89 Christmas baskets and lots of toys for the Children of Cook Medical Hospital .

Join Us for Congenital Hyperinsulinism Awareness Weekend in the Fort Worth Historic Stockyards

HI Awareness Meeting

Friday, September 24, 2010

Location: Hyatt Place Fort Worth Historic Stockyards

132 East Exchange

Fort Worth,Texas 76164

Guest Speaker: Dr. Paul S. Thornton

Hyperinsulinism Walk for Awareness

Saturday, September 25, 2010

Location: Stockyards Station in the Historic Stockyards

132 East Exchange

Fort Worth,Texas 76164

For more information and to reserve your Seat at the Awareness Meeting Please clock the Link Below.

http://www.congenitalhyperinsulinismwalk.org/

Please sign this Petition.

We are wanting to make it Mandatory that each hospital Must test New born Sugar with in the first 10 minutes of life.
Regardless if the mother has had a healthy pregnancy.

http://www.thepetitionsite.com/1/mandatory-blood-sugar-testing-for-new-borns#

TOO Much Insulin.Org

http://www.toomuchinsulin.org/

Congenital Hyperinsulinism - Athena Diagnostics

2009-08-16T18:35:00.000-07:00

Frequently Used Abbreviations: CH: Congenital Hyperinsulinism; GK: glucokinase; GDH: glutamate dehydrogenase; HI: Hyperinsulinism; KATP channel: ATP-regulated potassium channel; SCHAD: short-chain 3-hydroxyacyl-CoA dehydrogenase

Introduction

Congenital Hyperinsulinism (CH), which is also known as familial hyperinsulinism (FHI) or persistent hyperinsulinemic hypoglycemia of infancy (PHHI), is the most frequent cause of severe, persistent hypoglycemia in newborns and children. In 25-40% of affected neonates, CH leads to lasting consequences such as developmental delay, mental retardation, or even death (1). CH is due to unregulated insulin release from either the entire pancreas (diffuse CH) or confined pancreatic areas (focal CH). In most countries, CH occurs at an approximate frequency of 1/25,000 to 1/50,000 live births.

To date, mutations in any one of five different genes have been associated with CH. Depending on the underlying genetic defect, prognosis and treatment of CH may vary. While CH due to mutations in GLUD1, GCK, or HADHSC are generally responsive to drug therapy, CH associated with mutations in ABCC8 or KCNJ11 often requires variable degrees of pancreatectomy (2, 3). Mutations in ABCC8 or KCNJ11 can cause both focal CH, which can be cured by partial pancreatectomy, and diffuse CH, which may require near-total pancreatectomy, potentially leading to life-long sequelae (4).

Genetic testing for CH-associated mutations in ABCC8, KCNJ11, GLUD1, and GCK can diagnose about 85% (5) of the most severe cases of CH. In addition, genetic testing may allow distinction between diffuse and focal forms of ABCC8- or KCNJ11-associated CH in many cases and identify cases of CH that are likely to respond to drug therapy (6).

KATP Hyperinsulinism (KATP HI)

KATP HI is due to loss-of-function mutations in either ABCC8 or KCNJ11, which encode the two protein components (Sur1 and Kir6.2, respectively) of the ATP-regulated potassium channels (KATP channels) in the membrane of pancreatic ß-cells (2). Closing of the KATP channels represents a crucial step in the complex chain of events that links a rise in blood glucose concentration to insulin release (see Normal Physiology of Insulin Release). In KATP HI, KATP channels are defective and remain closed most of the time, decoupling insulin release from the blood glucose concentration.

Of note, gain-of-function mutation in KCNJ11 do not lead to CH, but to the “complementary” condition, neonatal diabetes mellitus (7)

If you want to learn more about Normal Physiology of Insulin Release please click here.

Glutamate Dehydrogenase Hyperinsulinism (GDH HI)

GDH HI is due to gain-of-function mutations in GLUD1, the gene for the enzyme glutamate dehydrogenase (GDH) (8). GDH catalyzes the oxidative deamination of glutamate, leading to a rise in the intracellular ATP/ADP ratio. GDH activity is stimulated by leucine and inhibited by GTP. CH-associated mutations in GDH lower the enzyme’s sensitivity to its inhibitor GTP, allowing increased enzymatic activity in response to leucine. In pancreatic ß-cells, the increased GDH activity can give rise to an intracellular ATP/ADP ratio sufficient to trigger insulin release, decoupling insulin release from blood glucose concentration.

Glucokinase Hyperinsulinism (GK HI)

GK HI is due to gain-of-function mutations in GCK, the gene for the enzyme glucokinase (GK) (9). GK catalyzes the first and rate-limiting step of glycolysis and thus determines the rate of ATP production in ß-cells in response to the blood glucose concentration. If GK activity is increased due to a gain-of-function mutation, an intracellular ATP/ADP ratio sufficient to trigger insulin release is reached at lower than normal glucose concentrations.

Of note, loss-of-function mutations in GCK do not lead to CH, but to the "complementary" condition, diabetes mellitus (10, 11).

SCHAD Hyperinsulinism (SCHAD HI)

SCHAD HI is due to loss-of-function mutations in HADHSC, the gene for the enzyme short-chain 3-hydroxyacyl-CoA dehydrogenase (SCHAD) (3, 12). SCHAD is involved in fatty acid oxidation.

Congenital Hyperinsulinism Due to Unknown Causes

In about 45% of all cases, the cause of CH is not clear. It is likely that at least some of these cases are due to regulatory or intronic mutations or major deletions/ rearrangements in the five genes known to be associated with CH (13). In addition, mutations in other, as yet unidentified, genes may lead to CH.

Clinical Presentation of CH

KATP HI can occur in a diffuse and a focal form. Focal CH has been estimated to account for 40-70% of all cases of CH requiring pancreatectomy, with the remainder due to diffuse CH (6, 14, 15). Patients with KATP HI usually have high birth weights and present with severe hypoglycemia during the first days of life. In addition, they often manifest hypotonia, poor feeding, and apnea. Exceptions to this rule are cases of diffuse KATP HI caused by rare dominant mutations in ABCC8; such autosomal dominant diffuse KATP HI is associated with a much milder phenotype (16, 17, 18).

GDH HI is a diffuse form of CH and typically much milder than KATP HI, so that it may not be recognized until the affected infant is several months old (19). GDH HI is characterized by post-prandial hypoglycemic episodes and mildly elevated, apparently asymptomatic plasma ammonia levels. GDH HI is also known as hyperinsulinism-hyperammonemia syndrome.

GK HI is a diffuse form of CH with a typically very mild phenotype, although a severe case of GK HI has also been reported (20). Onset of presentation can range from infancy to adulthood (9, 21, 22).

SCHAD HI is a diffuse form of CH that presents during infancy. The phenotype can range from mild to severe (3, 12).

Diagnosis of CH

CH is suspected in infants and young children with episodes of spontaneous severe hypoglycemia lasting longer than 48 hours. Since insulin levels in patients with CH may fluctuate widely over time, diagnosis cannot always be achieved by demonstrating an elevated blood insulin concentration at the time of hypoglycemia. Other signs of unregulated insulin action are hypoglycemia during glucose infusion, low blood levels of free fatty acids and ketones at the time of hypoglycemia, and a rise in blood glucose after glucagon administration at the time of hypoglycemia. A fasting study may be required to provoke hypoglycemia and confirm the diagnosis of CH. Due to the genetics of CH, a family history of CH is not always apparent.

It is important to distinguish between KATP HI, GDH HI, and GK HI, because treatment options may vary drastically. In addition, focal and diffuse KATP HI should be differentiated, since focal KATP HI can potentially be cured by partial pancreatectomy.

KATP HI can often, but not always, be identified through acute insulin response studies (for details, see call-out) (23). GDH HI is characterized by elevated plasma ammonia levels and leucine-sensitive hypoclycemia; however, leucine-sensitivity has also been described in the case of KATP HI (18). Presence of 3-hydroxyglutaric acid in urine and raised plasma levels of 3-hydroxybutyryl-carnitine are indicative of SCHAD HI (3).

Differentiation between the diffuse and the focal form of KATP HI is difficult. Acute insulin response studies cannot reliably distinguish between these two forms of KATP HI (15, 24), and even highly involved procedures such as pancreatic arterial stimulation venous sampling or transhepatic portal venous sampling are only 70-80% accurate in differentiating diffuse and focal CH (15). Preliminary reports indicate that 18F-DOPA PET scans may be useful for localizing focal lesions (25).

Genetic testing allows differential diagnosis of GK HI, GDH HI, and KATP HI without lengthy, complicated, and potentially ambiguous diagnostic studies. In addition, genetic testing can help to distinguish between the diffuse and the focal form of KATP HI. Arterial stimulation venous sampling or transhepatic portal venous sampling can then be used to localize the focal lesion within the pancreas.

If you want to learn more about:

Acute Insulin Response Studies please click here.
Arterial Stimulation Venous Sampling (ASVS) please click here.
Transhepatic Portal Venous Sampling (THPVS) please click here.

Treatment of CH

GK HI, GDH HI, SCHAD HI, and autosomal dominant diffuse KATP HI due to rare, specific autosomal dominant mutations in ABCC8 (16, 17, 18) are usually responsive to diazoxide, which is believed to inhibit insulin secretion through opening KATP channels. In contrast, most cases of diffuse and focal KATP HI cannot be adequately managed with diazoxide, since KATP channels are non-functional. Instead, octreotide (a somatostatin analogue) or continuous dextrose is used for therapy. However, in most cases of KATP HI, drug therapy fails, and pancreatectomy is required (4).

In patients suffering from diffuse KATP HI, typically over 95% of the pancreas has to be removed to avoid recurrent hypoglycemia. This near-total pancreatectomy can lead to life-long diabetes. In focal KATP HI, by contrast, only the part of the pancreas containing ß-cells with defective KATP channels has to be removed. Such partial pancreatectomy can offer a cure for focal KATP HI.

Genetics of CH

If you or your child have been diagnosed with congenital hyperinsulinism the Link below should be your first stop.

Congenital Hyperinsulinism - Athena Diagnostics

http://www.athenadiagnostics.com/content/diagnostic-ed/endocrinology/hyperinsulinism

Athena Diagnostics - Find Test

http://www.athenadiagnostics.com/content/test-catalog/

Disease reviews (Athena)

http://www.athenadiagnostics.com/servlet/DownloadServlet?id=306

Kaylee Story

2009-08-16T18:32:00.002-07:00

In late October 2006 Kaylee Ott was diagnosed with Hyperinsulinism, a genetic disorder that causes the pancreas to produce too much Insulin. Increased insulin production can lead to low blood glucose levels, which causes seizures, brain damage and sometimes death. As parents we were surprised by the diagnosis because for four months we'd been told she was healthy but after the diagnosis it was realized that in fact she'd been sick her entire life.

Kaylee was born in June 2006 at 37 weeks gestation, which is considered full term. She was 8 pounds, 13 ounces and 21 inches long. The doctors were all surprised at her weight and decided that I must have had Gestational Diabetes even though I'd passed all the tests for Gestational Diabetes. Right after birth Kaylee had issues maintaining appropriate blood glucose levels. For a normal persons blood glucose level should be between 70 - 100 mg/dL with anything below 60 mg/dL being considered low although typically people don't show symptoms unless lower than 50 mg/dL. At birth Kaylee was below 10 mg/dL, which meant she had to be put on an IV and a Dextrose drip. Dextrose is also known as glucose and this is our primary source of energy in the body. It's given through an IV to bring up blood glucose levels to a normal range. Kaylee gradually came up to normal but never officially was within the 70-100 mg/dL range. When she left the hospital three days after her birth her blood glucose levels were in the 50 mg/dL range.

Upon discharge the doctor's said that her levels would normalize and not to worry because this was typical for babies who's mothers had Gestational Diabetes. We returned to the doctor's office for level checks two days after discharge as well as two weeks after discharge. Each time her levels weren't normal but they weren't so low as to cause concern. After the two-week check up with the doctor she was no longer tested for her blood glucose levels.

As first time parents we depended on the doctors to tell us if anything was wrong and at her two and four month check ups the doctors said everything was fine and that she was on track for weight, height and development. But clearly everything was not fine. We don't blame our pediatrician for not knowing though because Kaylee's symptoms weren't so abnormal that he could not catch them, nor did we as parents catch them. Her symptoms were that she was eating six ounces of formula every four hours when typically children who are four months old eat four to five ounces every three to four hours. Kaylee also slept through the night at eight weeks old and took three to four two hour naps a day. Once again this didn't raise any alarm in either the doctor or us because all babies are different and we just figured we had a calm tempered baby. Other things that we didn't notice were that she wasn't lifting her head during tummy time nor had she begun to roll over or sit on her own. Once again we thought every baby has its own pace and thought nothing of it.

About a week after Kaylee's four-month check up she had her first seizure. I of course was completely scared about the seizure and called the doctor immediately. He stated that it was probably a febrile seizure, which can happen with infants due to fever. Although Kaylee had no fever the doctor felt that she might in fact have had a fever and that brought on the seizure. He said not to worry and call back if she had another. Two weeks later she did have another but it occurred in the same manner as the previous seizure so once again it was assumed it was a febrile seizure.

It was a week later where Kaylee had another seizure that was worse than the other two and totally different. She seized for nearly 5 minutes where she was completely unresponsive. After the shaking stopped she continued to mildly seize and couldn't turn her head and was stiff. She also was unresponsive to our voices and her eyes would dart back and forth. This time the seizure was witnessed by most of my family and we all agreed that she needed to see the doctor right away.

At the doctors office Kaylee acted completely normal and the doctor was as confused as I was as to the reason for the seizures. I suggested testing her blood glucose levels because I had remembered that she had issues at birth and looked up online about seizures and found that low blood glucose levels can cause seizures. Although my doctor thought it was unlikely he agreed to test her and her blood glucose level was 33 mg/dL. The doctor was surprised and thought that the testing device had to be broken and sent us to the blood lab at the hospital for a more sensitive test. They drew her blood and sent us home to wait for the call from the doctor.

The doctor called two hours later and said that Kaylee's blood glucose level was 23 mg/dL at the lab and that he was going to call a doctor at Children's Hospital of Los Angeles and find out what we needed to do. About an hour later he called back and asked us to take Kaylee to the emergency room to be put on Dextrose and then be transferred to CHLA to be treated there.

We arrived at the ER and they started the IV and attempted to stabilize her. We spent five hours trying to bring her numbers up and it took two shots of Glucagon, which is a drug that causes the liver to release sugars into the body to help bring up blood glucose levels, before they could transport her to CHLA.
At CHLA they stabilized her and put her on medication to stop her pancreas from producing insulin. After nine days in the hospital she was sent home. This is when the worrying began.

With a child who has Hyperinsulinism, schedules are most important. Kaylee has a medication schedule she has to abide by. She has to take two medications, Diazoxide to stop Insulin production and Diuril to help with water retention, which is a side effect of the Diazoxide. She takes Diazoxide three times a day to maintain her levels. She takes the Diuril twice a day to keep the water weight off. As a result of the Diazoxide she has excessive hair growth as well, which doesn't bother her at the moment. We do remove the hair on her legs with hair removal creams but we leave the hair that's on her back, arms and butt. Although this is mainly bothersome to me as a parent and purely for cosmetic reasons, as she gets older children will begin to notice her extra hair and I plan to protect her from being teased by removing the offending hair from her body.

Kaylee is also on a strict eating schedule. When she gets older she'll also be on a strict diet but right now she's on a strict schedule for eating. She eats three times a day with snack in between. She eats at the same time each day to maintain her blood glucose levels. We have to watch how much protein she eats because it can counteract the carbohydrates she eats and cause low blood glucose levels. She has to eat a certain amount of food and also drink a certain amount of fluids to help keep her levels up.

As well to medication and food we have to make sure Kaylee doesn't get sick. Even a simple cold can cause problems with her blood sugar. We especially have to be careful of the stomach flu or any sickness that may result in her vomiting because that causes her to have extreme lows and can result in a hospital stay for her.

Because of those concerns I've decided to home school Kaylee in the hopes that I won't have to worry about her while she's away at school. Maintaining her blood sugar levels requires constant attention and I don't believe public schools can provide her with the attention she needs. I'm currently getting my degree in Early Childhood Development so I can properly teach her when the time comes.

Also we have to watch for developmental and cognitive delays due to her disorder. She was developmentally behind by about a month up until her first birthday but she has now caught up. Cognitively we believe she is fine and she didn't have any brain damage due to the seizures she had. But the effects won't fully be known until she enters school.

Overall I'm grateful that we found out what was wrong with Kaylee and she's being treated and that she has a mild case of Hyperinsulinism. Many children with this disorder need surgery to remove the pancreas or are on feeding tubes for constant feeding to maintain their levels. She still has the disorder but because it's mild we've been able to lead a relatively normal life, even though I'm constantly worried about her. The scheduling and food worries may be bothersome sometimes, but in the end it's what has to be done to keep Kaylee happy and healthy.

Texas face painters for our charity

2009-08-16T18:32:00.001-07:00

Face Paint For Charity - Face Painting and Glitter Tattoos has dedicated our business into raising funds for Congenital Hyperinsulinism. We specialize in beautiful and colorful full face designs. Each face is a creative work of Art that takes less than 5-10 minutes. We use only hypo-allergenic water-based makeup. (all of our products are from silly farm)

Glitter Tattoos are awesome too. They are water/sweat proof and can last 3 to 5 days. Or can be removed with alcohol. They're great entertainment for all ages. Glitter Tattoos look realistic but painless and commitment free. Each design takes 1 to 5 minutes to complete.

This business was started June of 2009. The ladies who donate their time to face paint have been makeup artist for 13 years.

Our products

I do not use acrylic craft paints - it is not meant to be used on skin! Don't be fooled by other face painters that use acrylic craft paint and say it is safe to use. The manufactures of acrylic craft paint did not formulate their products for face painting nor are they FDA approved to be safe to use on skin for prolong periods of time. Many of the acrylic craft paints contain non FDA approved chemicals and colorants such as nickle which can cause skin rashes

All of our products are from Silly farm.

Prices

Pay Range:
5 kids and less at a party$40.00 per hour

10- or more kids $65-125 per hour

60% is donated to our charity

Congenitalhikids.org


Please email us to set up a party.
We will travel 40 miles out side of Round Rock If you are wanting to hold a big Event In Dallas, Ft Worth, San Antonio Please call to schedule 30 days in advance



To schedule a party please visit the web site below.: www.facepaintforcharity.com

2009-08-16T18:31:00.001-07:00

Awareness Color and meaning of Congenital Hyperinsulinism

The color WHITE stands for the risk of diabetes

Children with Congenital Hyperinsulinism who undergo a pancreatectomy are not only at risk for continued hypoglycemic episodes, but face the risk of becoming diabetic as well.

The color SILVER stands for children who have physical and/or learning disabilities

Many children with Congenital Hyperinsulinism require long term tube feeds and use of intravenous fluids and medication designed to prevent recurrent hypoglycemia. The mechanism of this disease prevents the body from producing ketones, placing the child with Hyperinsulinism at greater risk of brain damage. A child with this disease must take in food frequently, though they are often subject to random episodes of hypoglycemia. This disease consumes hours each day and night and often requires extended and frequent hospital stays.

The color BABY BLUE and PINK

This stands for infant boys and girls battling this disease. Our goal is to establish newborn protocol for blood sugar testing in every state. Currently, each state varies in their standards (if they have any), with the majority of blood sugar testing being administered on babies born to mothers with Gestational Diabetes only.

Thank you

Thank you to all the healthcare professionals and researchers working hard to find a cure and treating this disease.

Families of HI

We also dedicate our ribbons to the children, adults, and families struggling with the effect of all the different types of Congenital Hyperinsulinism.

"There are so many unknown variables and mutations with this condition, making further research and support extremely important. The ribbons are meant to assist in gaining knowledge and the means through which the children and adults with Congenital Hyperinsulinism can be properly identified and treated".

Study information on the outcome of children with HI.

BACKGROUND: The term congenital hyperinsulinism (CHI) comprises a group of different genetic disorders with the common finding of recurrent episodes of hyperinsulinemic hypoglycemia. OBJECTIVE: To evaluate the clinical presentation, diagnostic criteria, treatment and long-term follow-up in a large cohort of CHI patients. PATIENTS: The data from 114 patients from different hospitals were obtained by a detailed questionnaire. Patients presented neonatally (65%), during infancy (28%) or during childhood (7%). RESULTS: In 20 of 74 (27%) patients with neonatal onset birth weight was greatly increased (group with standard deviation scores (SDS) >2.0) with a mean SDS of 3.2. Twenty-nine percent of neonatal-onset vs 69% of infancy/childhood- onset patients responded to diazoxide and diet or to a carbohydrate- enriched diet alone. Therefore, we observed a high rate of pancreatic surgery performed in the neonatal-onset group (70%) compared with the infancy/childhood- onset group (28%). Partial (3%), subtotal (37%) or near total (15%) pancreatectomy was performed. After pancreatic surgery there appeared a high risk of persistent hypoglycemia (40%). Immediately post-surgery or with a latency of several Years insulin-dependent diabetes mellitus was observed in operated patients (27%). General outcome was poor with a high degree of psychomotor or mental retardation (44%) or epilepsy (25%). An unfavorable outcome correlated with infancy-onset manifestation (chi(2)=6.1, P=0.01). CONCLUSIONS: The high degree of developmental delay, in particular in infancy-onset patients emphasizes the need for a change in treatment strategies to improve the unfavorable outcome. Evaluation of treatment alternatives should take the high risk of developing diabetes mellitus into account.

This information is located on the link below.

http://www.ncbi.nlm.nih.gov/pubmed/12824865

Emergency List for HI Parents

2009-08-16T18:30:00.000-07:00

Thank you Denise for Sharing this.

9:00 AM - Disconnect from feeding tube, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water, ½ Prevacid crushed & dissolved in 2.5 mls water, 1 ml Aquadeks; give 1 shot 0.1 Octreotide (must draw); feed 5 ozs formula & cereal with fruit (approx. 1 oz of formula in cereal) – tube feed remaining formula that is not taken by mouth

12:00 Noon - Decompress stomach, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water, feed 5 ozs formula, fruit & vegetable – tube feed remaining formula that is not taken by mouth

3:00 PM - Decompress stomach, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water; give 1 shot 0.1 Octreotide (must draw); feed 5 ozs formula – tube feed remaining formula that is not taken by mouth

6:00 PM - Decompress stomach, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water, 1/2 Prevacid crushed & dissolved in 2.5 mls water, feed 5 ozs formula, fruit & vegetable or formula & cereal with fruit (approx. 1 oz of formula in cereal) – tube feed remaining formula that is not taken by mouth

9:00 PM - Decompress stomach, check blood sugar*, give meds through G Tube: 1 Viokase crushed & mixed with 1 ml water, feed 5 ozs formula – tube feed what is not taken by mouth; connect to feeding tube w/D10

*If Blood Sugar Level (BSL) is below 50 (mild hypoglycemia) - bolus 12 mls D10 solution through G Tube & feed 2 ozs formula, recheck 15 minutes after eating

*If Blood Sugar Level (BSL) is below 40 (severe hypoglycemia) & Ty is unresponsive or is having a seizure - give 0.5 mg Glucagon sub-q in muscle & go to emergency room; if responsive and not having seizure - follow procedure for BSL below 50, recheck 15 minutes after eating

Simethicone drops – as needed for gas

Octreotide shots - give in fatty part of arms, legs, stomach or butt; hold needle in site for 10 seconds after all medicine has been injected

D 10 Solution - 30 grams glucose sugar (located on top of refrigerator in vacuum sealed container) in mixing container with water up to 300 ml mark

Diaper Bag Contents (For Ty)

Regular Diaper bag Contents

Diapers
Wipes
Change of clothes
Light blanket
Disposable diaper bags
1-2 Extra wubanubs
Burp rag
Bib
2 Bottles of water
2-4 oz bottles
Formula caddy with 2 scoops of formula in each compartment

Emergency Diaper Bag

§ Glucagon Shot
§ Simethicone Drops
§ Alcohol wipes
§ Cotton balls
§ 1 Large Zip Lock bag
§ Flush container
§ D-10 container
§ 1 Extension tube
§ 1 Large syringe
§ Extra Mickey
§ Viokase – 1 for every 3 hours
§ Prevacid – depending on time of day
§ Octreotide shot – depending on time of day

§ Red tips
§ Syringes for g-tube meds
§ Glucometer
§ Calendar with BSL Log
§ Emergency Contact Info & Condition Info
§ Zvex Pump in backpack with feeding bag if needed

Emergency list In case you half to call 911

Should you find this letter in your hands while one or both the parents of Andrew Ty Hammons are unresponsive, please immediately contact:

Denise Hammons – Mother Lee Ray Hammons – Father

Rhonda Brandin – Grandmother

Personal cell

Work cell
Home/Office

Tricia Russell – Aunt

Personal cell

work/office

Dr. Paul Thornton – Endocrinologist

#########

Dr. Alice Phillips – Pediatrician

########

Cook Children’s Hospital
682-885-4000

It is very important that you let whom ever know about your child's condition as this is a very rare disease and not to many people are aware of congenital Hyperinsulinism

Ty has a rare condition called Hyperinsulinism. He is under constant care with the blood sugar checks every 3 hours. If his blood sugar drops below 50 it is imperative that he seek immediate medical attention. Please take him to the nearest emergency room – preferably Cook Children’s Medical Center in Fort Worth.

Parents advice to other parents of HI Kids

Always keep spare prescription medication
in case of spills or loses If Parent is away longer then expected.
Octreotide, diazoxide or insulin may have to be packed in ice in a place where meds can be kept cold..

Always keep your glucagon injection kit
To increase BSL'sjust in case of an emergency.

A glucose testing kit
Should contain plenty of supplies and your BSL chart with a pen so you will be able to record BSL's

Tissues/Kleenex /cotton balls /alcohol
For wiping before and after BSL testing.

Two or Three spare syringes to administer medicines.

Ice pack
To keep meds cold

Cornflour
in small jar In case one needs to raise BSl's and other options aren't available

Spare insulin pen and needles
The insulin pen does not have to be cold.

Spare digestive enzymes (If it applies to your child).

A container, spoon and food.

Special instructions for children on Octreotide
always have several spare pump supplies and injection needles.

Special instructions for children on diazoxide
Diuretics.(If it applies to the child)

Mom and Dad ALWAYS carry a written copy of the pump’s program.

If the child has an octreotide pump, child might want to record on the pump covered with transparent tape, that the pump contains octreotide, NOT insulin.(This Is Very important)

Always keep extra batteries for the pump and all other parts that may needed.

Special instructions for tube fed children
ALways keep spare replacement G-tube (In case the one in place is pulled out)

NG-tube and supplies
always Include: tape, scissors, lubricant, litmus paper, small syringe

Talk with your doctor about how to install an NG-tube in case the G-tube is pulled out and can not be replaced immediately.

Most Important always have Spare feeding syringe and food :)

Medical Id Tags

Medic Alert Symbol : In My Jammies

http://www.cafepress.com/inmyjammies/3105766

MedicAlert® Watch

http://www.medicalert.org/Watch/

Medical Alert Bracelets

http://911medalert.com/?gclid=CI-zqfy-0poCFRJexwodkQMTFg

School Plan

Starting school with Congenital Hyperinsulinism (HI)

For many all that is required is that the school staff understand the risk of hypoglycaemia, how to identify it, and what to do in an emergency situation.
Remember that all children are entitled to attend mainstream school

Parents need to be persistent and follow up with the school on all aspects of the child’s care.(let the staff know it is OKAY to call you even on the little things)

Before starting school
Approach the school for an interview with relevant staff (school nurse /Teacher/ principal)
Provide all paperwork and discuss in detail your child’s daily management. Make sure the school understands what you require them to do.

Schools will provide details of who your child’s teacher will be before they start(this would be a good time to ask for an email) and set up an interview so the teacher can meet you and your child to discuss the management plan.

It is important to ask questions about how teachers and staff can work with the management plan for your child. Teachers may not agree to be held responsible for taking blood sugar tests and your child may require only the school nurse to take the blood sugar test. (Always best to set up a meeting with teacher/nurse/principal).

Documents: the 504 Plan

http://specialneedseducation.suite101.com/article.cfm/504plan

BSL Testing

Many families find it useful to keep a Glucagon injection kit at school, make sure the staff knows it should be kept in the school fridge.(Place your childs name and number on the injection kit)

A nurse or school staff whom is appointed to hand out medication will be authorized to do BSL.
If testing is done on a regular basis. at school you might think about having two Glucometers in case there is a problem with one.

Education of Staff

It is important to ensure that where non-medically trained staff are required to take your child’s BSL they are trained to do so, understand how to use the glucometer and to identify the signs of a hypo. Not all children show the same signs of a hypo, if at all, so ensure these details are included in the information provided to the school and you discuss this with the child’s teachers.

Check with the school to establish whether they have procedures in place to ensure ALL STAFF are aware of your child’s issues, and that any casual or replacement teachers for your child’s class are briefed prior to taking the class.

Questions can often arise from other children about your child’s condition, and you may wish to discuss with the teacher the possibility of providing the class with the basic information on your child’s condition and why they have to have BSL tests, eat during class time or have a carer. This can help demystify the whole process and may save your child from having to constantly answer questions about their situation.

It is important to make sure that non medical trained staff are trained to take your childs BSL.
Make sure you let the staff know that not all children show the same signs of Hypo and some children may not show any signs of Hypo.

It is important to these details are included in the information provided to the school and you discuss this with the child’s teachers

Make sure that the school will have procedures in place to ensure ALL staff are aware of your child’s issues.
Make sure that replacement teachers for your child’s class are informed about your child's condition.

If your child must travel in the school bus , Please make sure the bus driver is aware of your child’s condition, especially if he/she is the only adult on the bus.

Pregnancy(HI)

If you are pregnant and have questions Please click on the link below

http://www.chop.edu/consumer/jsp/division/generic.jsp?id=71057

More information about HI (CHOP)

http://www.chop.edu/consumer/jsp/search/results.jsp?page_number=1&max_results=50&search_text=congenital+hi

Resources

2009-08-16T18:29:00.000-07:00

Cook Children's Health Care System

http://www.cookchildrens.org/

Children's Hospital of Philadelphia

http://www.chop.edu/

Ronald McDonald Houses

Ronald McDonald House of Ft Worth

http://www.ftworthrmh.org/

Ronald McDonald House Charities of Austin and Central Texas

http://www.rmhc-austin.org/

Philadelphia Ronald McDonald House

http://www.philarmh.org/

National Organization for Rare Disorders(NORD)

(Our Organization is now listed on their web site)

http://www.rarediseases.org/

Familial Hyperinsulinism (FHI)

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene?=hi

Athena

Athena Diagnostics - Find Test

http://www.athenadiagnostics.com/content/test-catalog/

Congenital Hyperinsulinism - Athena Diagnostics

http://www.athenadiagnostics.com/content/diagnostic-ed/endocrinology/hyperinsulinism

Disease reviews (Athena)

http://www.athenadiagnostics.com/servlet/DownloadServlet?id=306

Your Lab Data - The genetic basis of congenital hyperinsulinism

http://www.yourlabdata.com/index.php?option=com_content&task=view&id=48108&Itemid=75

SEQUENCE: Congenital Hyperinsulinism Genetic Testing, ABCC8, KCNJ11, and GLUD1 Hyperinsulinism

http://www.ambrygen.com/Clinical_Diagnostic_and_Carrier_Testing/test_Congenital_Hyperinsulinism.asp

Social Security

How to Apply for Social Security Benefits

http://usgovinfo.about.com/library/howto/htsocsec1.htm

Social Security Online - The Official Website of the U.S. Social Security Administration

http://www.ssa.gov/

School Plan

Documents: the 504 Plan

http://specialneedseducation.suite101.com/article.cfm/504plan

Research & Articles

Subtotal Pancreatectomy Remains Treatment Of Choice For Congenital Hyperinsulinism

http://www.docguide.com/news/content.nsf/news/8525697700573E1885256AB6005A9327?Open&id=48DDE4A73E09A969852568880078C249&count=10

Persistent Hyperinsulinemic Hypoglycemia of Infancy: eMedicine Pediatrics: General Medicine

http://emedicine.medscape.com/article/923538-overview

Endocrinology: Understanding The Genetics Of Congenital Hyperinsulinism

http://www.sciencedaily.com/releases/2008/07/080701175547.htm

Congenital Hyperinsulinism : Background - Contact a Family Directory

http://www.cafamily.org.uk/medicalinformation/conditions/azlistings/c642_1.html?print=all

Preoperative Evaluation of Infants with Focal or Diffuse Congenital Hyperinsulinism

http://jcem.endojournals.org/cgi/content/full/89/1/288

KATP channels and insulin secretion disorders

http://ajpendo.physiology.org/cgi/content/full/283/2/E207

Genetic and Nongenetic Forms of Hyperinsulinism in Neonates

http://neoreviews.aappublications.org/cgi/content/extract/5/9/e370

SUR1/YPL057C Summary

http://www.yeastgenome.org/cgi-bin/locus.fpl?locus=SUR1

KIP2 Expression in Normal Islet Cells and in Hyperinsulinism of Infancy

http://diabetes.diabetesjournals.org/cgi/content/full/50/12/2763

GDH HI - WrongDiagnosis.com

http://www.wrongdiagnosis.com/medical/gdh_hi.htm

Hyperinsulinism/Hypoglycemia (The 5-Minute Pediatric Consult)

http://www.wrongdiagnosis.com/h/hypoglycemia/book-diseases-20a.htm

Mechanism of action of a sulphonylurea receptor SUR1 mutation

http://hmg.oxfordjournals.org/cgi/content/abstract/16/16/2011

Sulfonylurea receptor

http://en.wikipedia.org/wiki/Sulfonylurea_receptor

Children's Special Needs Network

http://www.special-children.org/links.htm

Developmental Delays

http://learningdisabilities.about.com/od/glossar1/g/develdelay.htm

Developmental disability, early intervention, developmental delays

http://www.firstsigns.org/

SpringerLink - Journal Article

http://www.springerlink.com/content/e5tx4ef50px54vb3/

The Human Pancreas: function of, diseases of, picture, shape, body location

http://www.mamashealth.com/organs/pancreas.asp

Molecular Genetics and Metabolism : Hyperinsulinism/hyperammonemia syndrome

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WNG-4BSVR12-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=03968b3cc1f1e84a701ba1b669b1abbd

Hyperinsulinism/Hyperammonemia Syndrome in Children

http://jcem.endojournals.org/cgi/content/full/86/4/1782?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=hyperinsulinism&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

Hyperinsulinism–hyperammonaemia (HI/HA) syndrome

http://www.endocrine-abstracts.org/ea/0017/ea0017p39.htm

[¹⁸F]-DOPA Positron Emission Tomography for Preoperative Localization in Congenital Hyperinsulinism

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ArtikelNr=137655&Ausgabe=239008&ProduktNr=224036

Characterization of Hyperinsulinism in Infancy Assessed with PET and 18F-Fluoro-L-DOPA

http://jnm.snmjournals.org/cgi/content/full/46/4/560

Noninvasive Diagnosis of Focal Hyperinsulinism of Infancy With [18F]-DOPA Positron Emission Tomography

http://diabetes.diabetesjournals.org/content/55/1/13.full

MD Consult - Congenital hyperinsulinism and the surgeon: lessons learned over 35 years.

http://www.mdconsult.com/das/citation/body/138985131-2/jorg=journal&source=MI&sp=10842004&sid=0/N/10842004/1.html?issn=

Enzyme defect leads to hyperinsulinism

http://news.bio-medicine.org/biology-news-3/Enzyme-defect-leads-to-hyperinsulinism-6651-1/

Surgical outcomes in congenital hyperinsulinism of infancy (CHI) pre and post the introduction of diagnostic

http://www.endocrine-abstracts.org/ea/0017/ea0017OC16.htm

Paediatric Endocrinology

http://www.doh.gov.za/mts/reports/endocrinology.html

Nutrition and diagnosis-related care

http://books.google.com/books?id=wFzHkKEf0GwC&pg=RA1-PA522&lpg=RA1-PA522&dq=meds+children+take+for+congenital+hyperinsulinism&source=bl&ots=6lZfYlasVI&sig=WZlsxXmOgZ7zpz2qVEn-aS2rkSE&hl=en&ei=thcXSrDXEqiDlAf_v4XLCw&sa=X&oi=book_result&ct=result&resnum=2#PRA1-PA522,M1

Utility of [F-18] fluoroDOPA for Neonatal Hyperinsulinism

http://clinicaltrials.gov/ct2/show/NCT00674440

How a Mother Overcame a Malady

http://www.forward.com/articles/7938/

Diabetes

children with DIABETES Online Community

http://www.childrenwithdiabetes.com/

Bloodindex - Blood sugar converter
http://www.bloodindex.net/Blood_Sugar_Converter.php

Diabetes at School - For Parents & Kids - American Diabetes Association

http://www.diabetes.org/for-parents-and-kids/living-with-diabetes/diabetes-school.jsp

Children with DIABETES - Information for Teachers

http://www.childrenwithdiabetes.com/d_0q_200.htm

Advice from a parent about Corn Starch(always consult with your doctor)

We give Collin cornstarch with a glass or two of whole milk each night before bed. (1-2 heaping tblspns per glass). To my knowlege, medical professionals are not certain why, exactly, the cornstarch works to stabilize blood sugar in kids with HI overnight. I know that cornstarch is NOT to be used in diabetics or children under a certain age (1 year?). The cornstarch looses effectiveness for helping to maintain bloodsugar when heated or added to liquid with sugar. It can also be added to feeding tubes. Be warned, that you should clean up or drink the stuff ASAP-- it can get messy!

D10 or D20 is used by IV when Collin gets sick (especially stomach flu) to keep his blood sugars safe. We have to take him to his physician &/or the hospital for this to be administered.

Glucagon is used for emergencies when Collin's blood sugar drop dangerously low & he becomes unresponsive.

Jennifer

State Specific Assistance

State Health Agencies(50 states)

http://www.fda.gov/oca/sthealth.htm

Health Coverage for All Children Campaign

http://www.childrensdefense.org/helping-americas-children/childrens-health/health-coverage-for-all-children-campaign/

AAP Children's Health Topics: CHILDREN WITH SPECIAL HEALTH CARE NEEDS

http://www.aap.org/healthtopics/specialneeds.cfm

Speech And Language

Speech and Language Developmental Milestones [NIDCD Health Information]

http://www.nidcd.nih.gov/health/voice/speechandlanguage.asp

Speech and Language Milestones for Babies and Children

http://www.childrensdisabilities.info/speech/language-milestones.htm

Free speech therapy tips for children with speech, language delay

http://www.leomagan.com/

How to Teach a Child With Speech Delay

http://www.ehow.com/how_2069849_teach-child-speech-delay.html

Family-friendly supports for communicating with picture symbols and pecs

http://www.givinggreetings.com/

Special Feeding Needs

So Your Baby / Child Needs To Be Tube Fed

http://infantrefluxdisease.com/infant_acid_reflux/tube-feeding.php

How to Care for a G-Tube

http://www.ehow.com/how_2053455_care-gtube.html

Percutaneous Gastrostomy Tube Care, Cincinnati Children's Hospital Medical Center

http://www.cincinnatichildrens.org/health/info/abdomen/home/perculator.htm

Catheter Care

How To Care For Your Foley Catheter Care Guide Information

http://www.drugs.com/cg/how-to-care-for-your-foley-catheter.html

How to Care For Your Catheter

http://alzheimers.about.com/od/caregivers/a/catheter_care.htm

Peripherally Inserted Central Catheter

Pediatric Peripherally Inserted Central Catheter (PICC) Line Insertion

http://www.cpmc.org/learning/documents/piccline-ped-ws.html

Carbs & Diabetic Menu

Low-Carb Diet - Kids and Low-Carb Foods

http://pediatrics.about.com/od/obesity/a/708_lowcarbdiet.htm

High-Fiber Low-Carb Food List - Fiber Counts in Low-Carb Foods

http://lowcarbdiets.about.com/od/nutrition/a/fibercounts.htm

Counting carbohydrates - includes list of foods with carbohydrates

http://findarticles.com/p/articles/mi_m0675/is_n1_v10/ai_11729520/

Carb Counting- Healthy Eating - American Diabetes Association

http://www.diabetes.org/for-parents-and-kids/diabetes-care/carb-count.jsp

Children with DIABETES - Readers' Favorite Recipes

http://www.childrenwithdiabetes.com/recipes/

Diabetic Menu Planning

http://www.your-diabetes.com/diabetic-menu.html

Complete Diabetic Menu

http://www.diabitieslife.com/diabetes/diabetes-diet/food/complete-diabetic-menu.htm

Our Support Groups

CongenitalHIkids(Yahoo)

http://health.groups.yahoo.com/group/CongenitalHIkids/

Causes on Facebook | Congenital Hyperinsulinism

http://apps.facebook.com/causes/241732/52311804?m=0409b04a

Causes on Facebook | Congenital Hyperinsulinism (HI) (CHOP)

http://apps.facebook.com/causes/318635/70733659?m=fb5a6ed7

MySpace.com - Congenital HI kids.ORG

http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=400137770

Medical Id Tags

Medic Alert Symbol : In My Jammies

http://www.cafepress.com/inmyjammies/3105766

MedicAlert® Watch

http://www.medicalert.org/Watch/

Medical Alert Bracelets

http://911medalert.com/?gclid=CI-zqfy-0poCFRJexwodkQMTFg

Sharps Compliance

http://www.sharpsinc.com/

Words to Google

Sur1 & Sur2

Diagnostic Algorithm

Differential Therapy

Pancreatic Imaging

Biochemical Background for Pancreatic Imaging

Correlation of Histology and 18F-DOPA-PET

Imaging of the Pancreatic Focus

Congenital Hyperinsulinism

Medications (The information on this site is on this link below CHOP)

http://www.chop.edu/consumer/jsp/division/generic.jsp?id=71065

Medical Treatment
Includes feeding, as well as drugs that block insulin secretion.

Feeding
Oral: babies may need to be fed a specific amount of sugar or other carbohydrates on a certain schedule to avoid low blood sugar. These feedings may include breast milk or infant formula, glucose water (also called dextrose water), and in older infants, cereals or bread and other starches. Feedings alone are rarely sufficient treatment.

Tube: involves an infusion of dextrose water or formula into the stomach. The tube is passed down the nose and into the stomach. For long term treatment, a gastrostomy tube can be placed directly in the stomach. Tube feedings may be used when the baby can not take in enough at feeding times. In this situation, formula can be infused over a short period of time through the tube. Babies can easily become dependent on the tube feeding and have difficulty eating by mouth. Careful attention must be paid to avoid this dependence. Some babies who take enough formula by mouth still need a continuous infusion of nasogastric dextrose to keep the blood sugar normal. This type of tube treatment does not typically interfere with the baby's feeding ability.

Drugs
Diazoxide (Proglycem): oral medication given 1-3 times a day. Works on the SUR to block the release of insulin. In some types of HI, diazoxide works well , in others it is ineffective. Common side effects of Diazoxide are:

* Hypertrichosis - Extra hair growth on the body (eyebrows, eyelashes, back, and arms) which goes away months after medication is stopped.
* Fluid Retention - Some babies require daily diuretic medication for a short time to avoid fluid retention.

Octreotide (Sandostatin): given by injection 3-4 times a day. It works by decreasing the secretion of insulin, however, it does not work directly on the SUR. In place of shots, octreotide may be given as a continuous infusion using an insulin pump. Common side effects of Otreotide are:

* Short-term - transient diarrhea
* Long term - possibility of gallstones. Suppression of growth hormone is a theoretical concern, but is usually not a problem.

Nifedipine and Verapamil: calcium channel blockers. Work by blocking calcium from entering the beta cell and therefore, stopping insulin secretion. Unfortunately, they are not often successful in preventing low blood sugar.

A common side effect of Nifedipine and Verapamil is low blood pressure.

Glucagon: an injectable drug that briefly raises the blood sugar by releasing sugar from the liver into the bloodstream. Used as an emergency drug to quickly raise the blood sugar for 1 hour when the baby has low blood sugar but cannot feed. Can also be infused slowly into the vein while the baby is in the hospital for several days while tests are performed and treatment decisions are made. Chronic treatment of HI with glucagon at home is not currently feasible.

A common side effect of Glucagon is a brief period of nausea and vomiting.

Surgical Treatment
Removal of part of the pancreas (partial or subtotal pancreatectomy). Surgery is performed when medical treatment fails to prevent low blood sugar. The type of surgery depends upon the type of HI. With Diffuse KATP HI, a 95 % pancreatectomy is commonly performed. With Focal KATP HI, removal of only the diseased focal area of the pancreas is attempted.

Surgical treatment can result in:

* A cure of focal HI if the focal area was completely removed
* Stabilization of blood sugars with or without additional medical treatment
* Continued low blood sugar
* High blood sugar (diabetes)

For the first few days after surgery almost all babies have high blood sugar and may require insulin. The high sugar immediately after surgery is a result of the stress of surgery and anesthesia. It is not an indication of the baby's ultimate need for insulin or any other treatment. The outcome of surgery can be tested after the infant has recovered from the operation and is eating normally again.

Genetic Defects and Diazoxide
Hyperinsulinism is caused by many different genetic defects. The following are the three most important in relation to Diazoxide.

Potassium channel defect
The most common form of hyperinsulinism is caused by a defect in the potassium channel (KATP channel). In many cases this channel is missing and in other cases it is there but not functioning properly. Diazoxide acts on this channel to prevent insulin release. Therefore, in cases where this channel is missing, Diazoxide will not work.

In cases where the channel is present but not functioning properly, Diazoxide may work a little or not at all.

Hyperinsulinism/hyperammonemia syndrome
The second most common cause of hyperinsulinism is the hyperinsulinism/hyperammonemia syndrome, in which the gene defect has nothing to do with the potassium channel, but instead interferes with the metabolism of glutamate in the cell, causing excessive insulin secretion. Children with this syndrome all have normal potassium channels and thus Diazoxide works on this channel and prevents insulin secretion.

As a result, most patients with glutamate dehydrogenase hyperinsulinism will be responsive to Diazoxide.

Glucokinase hyperinsulinism
The third type of hyperinsulinism, which is extremely rare, is glucokinase hyperinsulinism. In this condition the potassium channel is also functioning normally but the defect is at another site in the cell. Therefore, in this condition, Diazoxide, by acting through the potassium channel, works very well to prevent hypoglycemia.

Diazoxide
Diazoxide is an oral medication that can be given anywhere from q day to tid. The dose is generally prescribed based on body weight and ranges from 5-15 mg/kg/day. As the dose gets higher, the side effects of the drug become greater. The main side effects are initially fluid retention (increased swelling of the feet, hands, and face), increased weight gain from excessive water being stored in the body and in small infants, this can cause heart failure due to fluid overload.

A later side effect is the increased growth of hair on the body including not only the head, but also on the face, arms, legs, and back. This is not a sexual type of hair (pubic hair or underarm hair), but rather an increase in the normal body hair found in all infants and children. Many parents find this increased hair growth a nuisance and many will use different methods to get rid of the hair, such as shaving, etc.

Like all drugs, Diazoxide may cause an unpredictable allergic reaction consisting of skin rashes or a more serious allergic reaction. It can also cause a decrease in the blood count. Finally, some children experience nausea, and loss of appetite.

Overall, Diazoxide is a very serious drug and when effective, it usually works extremely well.

Most children, who start on diazoxide and in whom it works very well, will be on it for many years. However the dose is not always increased as the child gets bigger. This is something that the individual physician looking after the child will decide based on blood glucose control.

Terrelle's story

2009-08-16T18:28:00.001-07:00

Hello everyone my name is Terelle! I have 1 older sister her name is Terrilynn and she is 7 years old. I was born in August of 2008 I came into this wonderful world weighing 9 lbs 8 ozs.

My mom and the doctors expected me to be big because my mommy had Gestational Diabetes when she was carrying me. When I was born my blood sugar was low which was expected so they rushed me to the NICU for further observation. I spent 7 days with some pretty lovely ladies who doted on me hand and foot at Women and Infants. Once I was able to maintain my BSL they sent me home.I was very excited to go home to be with my big sister, my mom and my dad. While at home I slept and ate on a pretty regular schedule.

At about 7 weeks old I began sleeping through the night with my last feeding being at 12:00am and not again until about 6:00am. My mom was surprised but content that I slept so well. About the third day into me sleeping through the night my mom got up to get my dad's breakfast and lunch ready for work at about 5:30am, she peeked over into my bassinet by the side of her bed to see how I was sleeping and all of a sudden I began convulsing.She picked me up and called my name over and over. I did not respond and my eyes rolled back as I stared blankly. She screamed for my dad and he called 911. I then came to and began crying, we jumped in the car and rushed to the ER.

Upon arrival at Hasbro Children's Hospital they took my BSL and it was 18. They immediately gave me an IV with Dextrose drip and admitted me to the PICU. A doctor from Endocrine came in to speak to my parents and said they were going to run some test. They thought it could just be a simple complication from my moms GD but they wanted to be sure. They tried to keep my BSL up with the Dextrose drip and frequent feedings but I kept crashing to critical low nearing the below 50 mark.

Day 3 in the hospital the put in a pic line and started pumping D50 but I still couldn't maintain my BSL when fasted. They put me on Diazoxide, they told my family it may take a while to see a response and said I could be there much longer. I responded very well and they began lowering my dextrose drip until I was completely off and just on the Diazoxide. I went home 3 days later.

It was hard for my mom and dad because I had to have my sugar checked before every feeding. But I was a trooper. We had to adjust my dosage a little so I wouldn't wake up with low BSL after that I maintained good BSL for the next several months.

In Feb and March of 2009 I started eating baby food and starting having BSL's consistently in the high 200 range. So after reviewing my numbers in late March the Endocrine doctor lowered my dosage of Diazoxide. Everything was good for the first few days but then I began to get cranky and my numbers started coming in lower my mom got worried and took me to the doctors when I began shaking and not sitting up. a

The doctor ordered test to be done the next morning My BSL was good upon examination and so were my vitals So I was able to go home.

While mom was getting me ready for bed and to take my BSL I went into a Grand Mal seizure. I began convulsing violently, foaming at the mouth as my eyes rolled back in my head. My mom yelled for my sister to call 911 and my dad ran and got my Glucagon.

My mom injected me as I came out of the seizure. When the ambulance arrived my mom explained my condition, she had just took my BSL after the Glucagon and it was 76. The EMT had no idea what HI was and when he took my BSL it was 90.He said it was stable and told my mom that I could be transported by car. My mom explained to him that she had just given an emergency med and I need to be rushed immediately. Upon arrival we my mom again explained my condition to the nurse and let her know we were diagnosed at that hospital and admitted there previously. They took my BSL and it was 35 they immediately gave me an Dextrose drip and admitted me to the PICU. They put me back on my original dose of Diazoxide and waited to see how I responded.

Several days went by and I failed the fast so they increased my Diazoxide and tried it again...I failed again. So they could only increase my dose a little more but Endocrine did not think I would respond so they added Octritide injection 4 times a day. The first shot my BSL increased to 486 so they began to turn down my Dextrose drip, till it was eventually off. That's when Endocrine informed my mom that it would be best for me to be transferred to CHOP as they specialize in treatment for HI. My family was scared for me but knew it was the best place for me to be. So after 2 weeks in the PICU at Hasbro's Children's Hospital a Medi Flight team arrived to take me and my mom to CHOP. My dad and big sister Met us at CHOP. The Med flight team was really fun, they played peek a boo with me.

When we arrived at CHOP they immediately stopped the Octritide. I went 7 hrs before crashing, but because they had such a hard time drawing the confirmation and I was crying of course my BSL increased so they continued the fast. Well this went on for 5 hours back and forth. So they increased my dosage to the maximum 1.3 ML 3 x a day and I have been maintaining ever since.They fasted me a week later and I went 19 hours. I got the Pet Scan done, it's Diffuse but I'm medically manageable now. So no surgery at this point.We go back to CHOP in July to see Dr. Stanley he was very nice. Hopefully at that time they will have the results of the genetic testing they did because it seems I'm just one of the rare kids with HI who don't have the "traditional" markers they look for. I now have my sugar checked every 4 hours and I'm still the happy chubby baby I've been throughout the whole ordeal. My family is hoping we can raise awareness so that others may not go through as much as we did before be diagnosed. We have a long road ahead of us but we are well prepared thanks to the wonderful teams we have behind us at Hasbro's Children's Hospital and CHOP.

A father's Love for his family and advice for dads.

My name is Terry, my son Terelle was diagnosed with HI at 7 weeks of age.That was one of the worse days of my life. As Fathers, Husbands and men in general it is our instinct to want to protect our families from all that may harm them. I felt overwhelmed as they threw out medical term after medical term. I couldn't bear to watch as they continuously poked and prodded my son for this and that test. My wife stood by holding him and just taking it in nodding and occasionally writing something down.That's when I realized how strong she was, I went over to her and wiped the tears from her eyes and you know she looked up at me and asked if I was okay. Men may be physically stronger then women, but women are built of some strong stuff that helps them to get through, one more minute, one more hour, one more day. A lot of days I didn't know what to do or say and I would just hug her. She told me most days that is what got her through. I love my family and I hate that my son is afflicted by this very rare but serious disease. So many people see him and say whats wrong he looks perfectly healthy. It's hard he's my son but I know we are getting the best care and with my wife so dedicated to him, our family and raising awareness of this disease I know all will be okay. One of the hardest thing dealing with is making my 7 year old daughter feel that it's not all about her baby brothers illness. I didn't realize the impact it had on her until one day while I was out with her and my wife was at CHOP with the baby someone asked how the baby was, and my daughter looked up and said I'm okay, I'm doing good. So now we strive even harder to keep her life as "normal" as possible while still dealing with Terelle's HI.

They say behind every strong man there is an even stronger woman, please remember that although she may be strong she too needs to have someone to lean on in her time of need.

Meet J.C

2009-08-16T18:27:00.000-07:00

I would like to introduce myself, my name is JC. I am the youngest of three with two older sisters, Becca 6 and Marisa 5. I was born in June 2008 and weighed in at 8 lbs 12 ozs at only 37 weeks. I arrived via cesarean section after a long and unsuccessful labor, but my mom says it was all worth it. She knew right away I had quite the appetite because I would nurse every 1-2 hrs and my appetite never seemed to decrease even when baby food was introduced. But even still we learned that food could only do so much to silence this disease lurking. On what appeared to be a typical Friday morning, only days before I turned 9 months our lives changed forever

That morning I awoke early and nursed like I always did while my sisters got ready for school. Then in an instant my body went limp and I began to have a seizure. My mom cradled me in her arms as I turned blue. She called 911 and after six minutes I regained color and slowly started to respond. My mom says it felt like an eternity.

During the EMS ride to hospital I continued to have absent seizures, where I would stare off into space. Doctors and nurses checked me out and everything appeared Ok until the lab work came back that revealed a glucose of 33. Figuring it is was an error a fingerstick was done and it also was critically low. Things happened so quick after this. I received bolus after bolus of IV dextrose only to have my sugar drop back to the 20s and 30s within minutes. Over the next week I charmed so many doctors and nurses with my deep dimples and long eyelashes. They always knew when my sugar would drop because so would my personality. I would suddenly go limp and nearly unresponsive.

Despite the continuous IV dextrose drip my body would still suddenly overproduce insulin and drop my sugar back into the 30s. When day 4 arrived the Pediatric Endocrinologist came into my hospital room early that morning. My parents prepared themselves for the worst when she came in and sat them down to discuss my plan of care. She said, “He is very young and when he had that seizure he more than likely used every ounce of glucose reserve his body had to offer so if he were to drop too low we would need to act quickly to help him recover because he probably can not do it on his own. However, in order to correctly diagnose him we must let his sugar crash one more time and when this happens you must step back and let the emergency team gather the appropriate labs and then recover him quickly.”

13 hours later I finally crashed and everything went as smooth as it possibly could have. Lab results revealed Hyperinsulism so I started on icky tasting diazoxide that same night and within hours we saw my glucose levels trend up and stabilize. The medication can cause fluid retention so at times I have to take a diuretic and it also causes excessive hair growth but my mom says it gives me character.

Because we have had a few bumps along the road I was sent to CHOP in July 2009 for evaluation. I was diagnosed with diffuse Congenital HI and the diazoxide was adjusted. It was tough accepting the reality that there is no cure but my family and I are grateful I am doing so well. I will have to follow up with my local doctors every 2 months and return to CHOP annually. My endocrinologist Dr. Lynch, tell my parents to keep an open mind and always expect the unexpected with HI.

Nonetheless, I am forever grateful to the beautiful nurses and doctors and Christus Santa Rosa Children’s Hospital in San Antonio , TX for taking such good care of me and my parents, they literally saved my life! Also I must thank the staff at CHOP for allowing us to feel so at home while there. The staff is amazingly educated and Dr. Stanley is the Hyperinsulinism Guru!

David Perish

2009-08-16T18:24:00.000-07:00

David is the baby you see in the you tube video (Thank You Debbie for letting us share this on our websites)

David was born at home with a midwife. This was not unusual for us as we had two of our other children at home with Midwife assistance. He was 10 lbs 8 oz even though he was 11 days early. The delivery was uncomplicated. The only thing I noticed right away was that David would suck like mad on anything you put in his mouth! He fed every 1 1/2 hours around the clock even though I had plenty of milk. By about 5 weeks he was having what we thought was tummy trouble, I'm sure due to all the excessive feeding. We got the classic "colic" response from our family doctor. So that's how we treated it. Of course the colic medicine I used was super sweet so when I gave it to him he settled down. It was like magic, now I know why, the sugar was bringing his blood sugar up!

I took David for his 2 month immunizations right on time and all seemed well. Two days later David had his first seizure. I didn't know that's what it was as I had never seen one before. His eyes went wild, looking all over the place and in different directions from each other and he had a sad/scared look on his face. My instinct was to pull him close to me and nurse him, then he would settle. It happened another time about a week later. Looking back on it I do know that these episodes happened if David's feed was stretched out to 2 1/2 hours instead of his usual 1 1/2 - 2 hours. In all, my guess is that David had 5 seizures over a period of 6 weeks.

At 3 months old David got a cold that turned out to be RSV. He was coughing a lot and looked slightly blue around his mouth. When I called the advise nurse she told me to immediately call 911. I did and the medics checked him out and suggested that we take him to emergency, even though their measurment of his oxygen level was high enough to be safe. Just when they were packing up one of the medics said "Do you mind if I check his blood sugar?", I said no. He said that it's not their normal protocol but he just thought he would have a look. Well, he got a reading of 39. I had a grandmother with type 2 diabetes so I knew this was a low number. We were all like "Wow, that's weird!", but not panicking because we really didn't know anything about babies and blood sugars. So we went to the emergency room and they were running tests to see what David was sick with. They did another blood sugar test (right after a feed) and it was 51. The emergency room doc didn't think that was low for a baby that was sick and he said infections could do that. They did the RSV test and it came back positive so they kept us overnight for observation. David's BSL's weren't checked again while we were there. We were discharged the next morning and went home with the "all clear". One week later we took our first outing and went shopping. Again David went past his 2 hour feeding mark and he had his worst seizure yet. I ran out to the car with him, nursed him and headed for the ER. Deep down I knew it had to be related to the blood sugar level. I ran into the ER with him, straight to the triage nurse and said "My baby had a seizure and last week he had a very low BSL reading." Because of this information they whisked us straight back and tested his blood sugar which was 36. They tested again 15 minutes later and it was 24. They had me nurse him and immediately got him started on i.v. glucose. They set in motion the process to get us to Children's Seattle and had us transported maintaining him around 55 BSL.

Then began all the blood tests and up and down blood sugar numbers while they were finding the right combination to keep him stable. Diazoxide was started at a low amount and David responded to it but over the next few days they had adjusted to the maximum dose and it was no longer keeping him up. They added the Octreotide at the smallest dose and it worked. They removed him from the Diazoxide cold turkey and his BSL started being unpredictable again. They put him on a "mid range" dose and he stabilized again. So after two weeks, 7 i.v.s and more blood tests that I can count we were sent home with the diagnosis of Persistant Hyperisulinemic Hypoglycemia of Infancy (PHHI). His regimen consisted of frequent feeding, and medication by injection every 6 hours. The injection has to be right on time because if he even goes 30 minutes past the time his BSL will go dangerously low. Over a 5 week time period we weaned David off the Diazoxide. Now he has only the injection of Octreotide. We have to watch his BSL very closely and if he were to have two BSL's 60 or below we are instructed to start the Diazoxide again. In Summer, David had his third dose increase of Octreotide to maintain his blood sugar levels.

David had genetic testing sent in to Athena Diagnostics around Spring, 2008. The test was supposed to take 3 weeks to complete but that turned into 3 MOTNHS! When the results of the genetic testing came back they showed a mutation in the ABCC8 gene passed on by David's father. This gave a very good chance that David could have a focal lesion on his pancreas and be a candidate for surgery.

The medication David was on, Octreotide, has a maximum dose ceiling. When you reach that level no matter how much more Octreotide you give your child will still be having low blood sugars. This happened for David in Fall 2007 when David was 10 months old. (This does not happen to every child on Octreotide, some are able to be on it for years with no problems.) In Fall, 2007 we packed our bags and went to Children's Hospital Philadelphia.

After all of the testing was complete the doctors found that David indeed had a focal lesion on the "neck" portion of his pancreas. He was scheduled for surgery in Fall, 2007. The doctors disected the neck and body portion of David's pancreas away from the head portion. They removed the neck portion, sealed off the head portion and rerouted the body and tail portion into his bowel. This procedure is called a Roux en Y. David was in the NICU for 5 days where he recovered quickly and well. Seven days after surgery David had the fasting test preformed and passed! He no longer needs medication and today is a happy healthy boy with no lasting effects from his journey. The scar on David's belly is 3 inches long and we think he will be very proud of it one day! This is David's story.

Collin Story He was featured on Discovery Health Channel

2009-08-16T18:23:00.000-07:00

Collin was born 3 weeks early, weighing 7 lb 8 oz. He was otherwise a very healthy baby boy. I noticed immediately that while most babies could sleep for 3 hours at a time, we were lucky to get 2 hours of consecutive sleep due to Collin's need to eat. Collin was frequently ill, developing severe pneumonia shortly after his first birthday. "Things just did not seem right". Try to explain that to anybody, much less a doctor. Collin was not just sleepy, he was frequently unresponsive, however, by the time we would get to a physician Collin would have perked up. I know now that this was his response to being given juice. These "episodes" gradually became severe enough that we know realize Collin was experiencing seizures due to the low blood sugar. During one of our trips to the emergency room, a physician opted to take Collin's blood sugar, testing him at 40. Although we were on the right track from that point, it would take over a year and even lower drops in Collin's blood sugar to finally get the diagnosis of Congenital Hyperinsulinism. Today, Collin is an energetic, rambunctious four year old. Although he has a speech delay for which he receives therapy, we are extremely blessed that there were no other permanent effects or damage resulting from his low blood sugar. We test Collin's blood sugar daily, as the specific type of HI he has does not respond to medication, with the exception of a Glucagon injection which we keep on hand for emergencies. Although there are various other precautions and measures we follow to maintain his health, I realize that we are extremely blessed and hope to educate and assist other families facing the same challenges.

Collin wears a medical ID tag and has his significant medical information on-line. His endocrinologist prepared a brief protocol that Collin's pediatrician has submitted to all local medical facilities- in the event that Collin has a blood sugar drop we do not have to waste precious time explaining his condition to the staff. I have learned that time is of the essence. A couple hours can mean the difference between an office visit and an in-patient hospital stay. We monitor Collin's diet closely to ensure he avoids simple sugars and eats plenty of complex carbohydrates. We no longer have to wake Collin up in the middle of the night to check his blood sugars or force feed him Pedisure drinks (not fun for anybody involved). I recently discovered that a couple glasses of whole milk with cornstarch before bedtime help to maintain my son's blood sugar over night (up to 8-9 hours straight!). Although certain day to day illnesses virtually guarantee blood sugar drops for Collin, they also can occur very unexpectedly. There is no "one" way to approach this disease given the various forms it can take. It is extremely important, however, to discuss any and all medical protocol with your medical professional. If you feel uncomfortable with the doctor or the advice, NEVER hesitate to get a second opinion.

Ty's Home 2 months

2009-08-16T18:20:00.000-07:00

Home 2 months

May 18, 2009

It's been a while since I've sent an update on the Hammons brood. We've all been so crazy around here it doesn't seem like its been 2 months...seems like forever. The days of spending the night in the hospital are mere memories. I pray they stay that way...just memories.

So many things have been happening I don't really know where to start. First summer is almost here. That means no more waking up at 6 AM, fighting to get Nick ready for school, making sure homework gets done-that's the up side. The down side is I'm going to have two big kids around pulling their hair out with boredom. I'm hoping I'll be able to take them to do a few things this summer to keep boredom at bay. Of course lil momma Sam will be happy to take care of Ty. July will have us with four of the five kids around...I better get ready now!

Ty has been doing great. He's sitting up on his own, rolling over, making all kinds of baby noises. He's just a miracle. We've decided he's the happiest baby we've ever seen. He is always full of smiles and giggles. It's the cutest thing. If we could bottle the sound and sell it the world would be a happier place - it's the sweetest sound ever! He's eating baby food like a champ but we still struggle with the bottle. I think he's a little impatient. hmmmm wonder where he might get that? His blood sugars still scare us at times but we keep a constant watch on it. We have gotten into a routine with the nurses coming three times a week. It's such a weight off our shoulders having the help. However it seems we have the crazy things happen when the nurses are gone. Several weeks ago Ty's button got clogged and we had to take a trip to the emergency room. I was so proud of everyone. We all stayed very calm and managed to get his emergency diaper bag & regular diaper bag packed without forgetting anything. When we first started taking him out it would take an hour to get the diaper bag ready - now we have a list of the 'required' items posted so there is no second guessing. Things run much smoother when we have something to go by. I call all of this our 'new' normal.

We took our first road trip during the week of Mother's Day. The kids' school was closed for the swine flu so we packed up and headed to Big Momma's. It was easier than I thought. Of course the car was packed so full that Nick barely had room in the back row. He almost had to leave his fishing pole behind - not a good thing!

We will take another trip in June to Austin for a fundraiser for the non profit organization started because of Ty. I'm excited to announce that we are working to raise awareness for hyperinsulinism and Cook Children's will be working with us. We even have a walk scheduled for September 2010! I'll send out more information later on about it.

None of these things would be possible if it weren't for all the support and prayers we have received. I cannot say thank you enough to all the people that have helped us. The Lord has answered our prayers in so many ways. We have a happy baby that is the picture of health despite his disease. We have a strong bond with our children - they know that we will be at their side no matter what. Ray and I have grown closer than I ever imagined possible. Ray still has a job - even if the hours are few and the industry is changing. God has been holding us in His hands and taking care of us. Thank you again for all of the love and support!

God Bless!

Ray & Denise

About our Organization

2009-08-16T18:19:00.000-07:00

Congenital hyperinsulinism (excessive insulin production) is the most common cause of persistent or recurring hypoglycemia (low blood sugar) in infancy. Many infants and children affected with any of the various forms of hyperinsulinism have recurring, severe episodes of hypoglycemia both before and after diagnosis that can cause seizures, brain damage, and developmental delay. Since undiagnosed hyperinsulinism or failure of treatment for hyperinsulinism significantly increases the risk of mental retardation and permanent brain damage, prompt diagnosis and aggressive treatment are crucial in the fight against this disease.

Because hyperinsulinism is a rare condition, only occurring in approximately 1/25,000 to 1/50,000 births, few facilities have the equipment and specialists necessary to diagnose and offer the best treatment for this disease. Currently, the Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia is the only center in the United States that performs the PET scan test in infants and children to help identify focal or diffuse hyperinsulinism.

If a child requires surgery for hyperinsulinism, parents can expect to stay at the hospital for at least one month. Children with hyperinsulinism require extra care at home in the form of blood sugar monitoring, maintaining regular feeding schedule, administering medications and glucagons. These prolonged hospitalizations and intense medical regimens can be stressful for the parents and families of children with hyperinsulinism.

A patient named Ty inspired Congenital HI Kids. Ty, like other infants born with congenital hyperinsulinism, was born into the fight of his life. He and his family face many challenges in his fight. Congenital HI Kids was formed to help Ty and other children like him in their fight against this disease. ”

Ty' Diary

2009-08-16T17:51:00.000-07:00

Monday, December 29, 2008 at 8:50pm

We really appreciate everyone's diligent prayers and ask that you continue to lift Ty up to God. At this moment we know the seiziers were due to low blood sugar. He is producing too much insilin which causes his blood sugar to drop. This condition can be treated with medication. The hypoglosemia sympotisms are secondary to the most difficult contition that was discovered. The MRI from yesterday came back with some particulary disturbing news. The white matter of Ty's brain(the matter directly under the grey matter of the brain which is considered the brain's 'superhighway') is sick. The initial diagnosis is Leukodystrophy. The leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient. From what we have been told, this condition is very serious with a life expectancy of a couple of months to a couple of years. There are a team of doctors working on answers and treatment plans. His films have been sent to a neurologist in dallas that specializes in white matter disorders. While this diagnosis is not 100%, there is definitely something going on with the white matter of his brain. As you can see, we have more questions than answers but I feel like that is more of a positive thing. At least we can rule out lots of different things and can keep searching for the real diagnosis. In short, Ty is very sick. It looks as if we are going to be in the hospital for a pretty good while. Having said all of this, we beg you to continue praying. We are offering my son up to the Lord and asking that His will be done. I was told today that by sending one message for prayer request resulted in 250 people from the USA to Africa to pray for Ty. Now that's only one major prayer line! Please continue doing what you are doing for us each day. And again, I will update as soon as I can.

Please everyone keep Ty in your prayers. Saturday night he began seizing around 11pm and it lasted about 30 minutes. We rushed him to the children's hospital in Fort Worth. After getting there he had another major seizier that lasted a bit over an hour. For the last 24 hours he has had many, many tests to try and figure out what the cause was. At this moment the culprit seems to be low blood sugar. The doctors are trying to determine what has caused this and are working to maintain the sugar levels in his body. We will be in PICU for at least one more day possibly two before he is moved to a regular room. We expect him to be in the hospital through the week. I promise to post more information when I can get back online.

Many thanks and love!

Denise

Thursday, January 1, 2009 at 11:34pm

Day 6 in PICU:

We have definitely figured out the low blood sugar problem Ty has been having. The current diagnosis is hyperinsulinemia. Hyperinsulinemia is an abnormally high level of insulin in the bloodstream. Chronic hyperinsulinemia is most often caused by insulin resistance, a condition in which the body cannot use insulin properly. Insulin is a hormone necessary to move glucose (blood sugar) from the bloodstream into the cells for use as energy. Insulin resistance is a feature of metabolic syndrome and type 2 diabetes. Ty is currently on medication to regulate the insulin in his body and seems to be reacting favorably to this treatement. We will have to continue to do regular blood sugar tests to ensure that we are on top of it even once he comes home. The good news about this condition is that when it is diagnosed in children, they often grow out of it!

We are still trying to deal with the white matter disorder of his brain. The neurologist has scheduled a second MRI for the first of next week to re-evaluate the brain. It is our greatest prayer that all of this will go away and it can simply be called a medical mystery. However the doctor is still very concerned that the frontal lobe of the white matter has been affected and we need to get down to the bottom of what is going on there. A blood test was ordered to determine if in fact we are or are not dealing with Leukadystrophy as mentioned in previous updates. The results for that test will take about 3 more weeks.

Ty was taken in for a procedure last night to have a Broviac line put in to better administer medication and blood transfusions. BROVIAC® catheters are like central venous pressure catheters except that they are made of a soft material called Silastic and have a cuff on them. The catheters are tunneled under the skin and come out away from where the catheter enters the vein. This procedure went very well and is a blessing for Ty - he no longer has to keep getting stuck when his little veins quit working with the IV's.

Last night we discovered that he has lost quite a bit of blood and was spilling it in his stool. A Meckel's scan was done this morning to determine where the blood was coming from. This is an investigation in which pictures of your abdomen will be taken with a special camera after you have received a small injection of a radioactive material. The test came back negative which means they were unable to detect where the blood came from. Another blood count test was done this morning after the scan and his blood count seemed to be ok so it was decided to hold off on any other testing and see if he continued to loose blood. He was given a blood transfusion last night and then again this morning. We do not think he'll have to have anymore transfusions but we are asking our family to be typed so that we can have a match with blood on reserve for him if necessary. It is believed that the main reason he has lost so much blood is because we were having to take so much to test his sugar levels. His blood was being tested every hour on the hour and sometimes every 10-15 minutes. His little body just couldn't keep up. So the fact that in the last 12 hours we have not detected blood in his stool is GREAT news.

In the mean time, Ty acts like a healthy baby! He is cooing, smiling, wiggling and in general is just plain happy. He simply refuses to act like a sick baby - he's very stubborn, just like his Daddy!!! I wish I had brought my camera home with me tonight so that I could have posted some new pics with this email but I'll do better next time, promise!

I want each and every one of you to know that the love that is being shown to this precious little angel and my family is powerful. Every moment of every day has been spent praising God for what he is doing with our family. We ask that you continue to do what you are doing and know that it means more to us than we can ever tell you. If you are local and can/want to come by, please feel free to get in touch with us to do so. Ray and I leave the hospital for a couple of hours at a time so that we can decompress...I come home to take showers because in a moment of blonde maddness I almost flooded the bathrooms by putting a towel down in the shower so I wouldn't have to wear my flip flops...bad move but I'm such a clutz I had to try.

Last but not least - if you are reading this blog and have a relationship with any of my other 4 babies, please do not discuss this with them. We are giving them age appropriate information at this time. If you have any questions, please either ask me or your parents. To all of my chosen kids, I love you and welcome your questions - email, call or text - I will do my best to help you support my kiddos through this time too.

May God continue to bless each of you for the support you are showing all of us!

Denise

January 2nd:

Day 7 in PICU:
Today we have been given a corrected version of Ty’s blood sugar issue. Yesterday I told you it was hyperinsulinemia however it is actually hyperinsulinism. Hyperinsulinism is an abnormally high level of insulin in the blood, resulting in hypoglycemia. He is being treated with medication for this and is responding favorably. The NG tube (nasogastric tube is a clear plastic tube that is inserted through the nose, down the back of the throat, through the esophagus and into the stomach that is used to feed a patient) was removed last night and Ty is now feeding from his bottle. This is slow going because the medication treating the hyperinsulinism suppresses his appetite. We are working towards feeding him 2-3 ounces every 3 hours. His blood sugar levels are tested after each feeding. When we left the hospital tonight for Mommy & Daddy decompression time, the blood sugar level was 65; normal blood sugar levels are between 80-100. The reason it was low is because he is not getting as much nutrition as before but this is ok. We are testing the different combinations of medication just to get them perfect. We are also regularly doing a hematocrit test. The hematocrit or packed cell volume (PCV) is the proportion of blood volume that is occupied by red blood cells. The latest levels were good and were up from the previous test. This tells us that his blood cells are reproducing and he shouldn’t need any more blood transfusion. An MRI is scheduled for Tuesday or Wednesday of next week to check the white matter of Ty’s brain again. The neurologist is hopeful that all of the white matter will look good however he is still very concerned about the frontal lobe. So to wrap this long email up – Ty is doing really good today and is acting like a happy baby. Let’s keep up the prayers!

January 4, 2009 – Day 8 @ Cook

What a difference a day can make! We were moved from PICU to a room on a regular floor last night. Daddy & I are so excited because this room has a private bathroom. Yep you guessed it – I can now shower at the hospital without fear of flooding the entire wing.

This morning we woke up to a very pleasant surprise: Nana & Paw-Paw (Ray’s parents) came in for some special Ty time. They got to give me the news from the doctor today instead of the other way around. I know it was a relief to them to get to meet with Ty’s doctor and have some one on one time with him for themselves. So here’s the update: Today Ty is eating rice cereal from a spoon and bottle feeding pretty well. Tonight Daddy & I tricked him by giving him a bite then popping the bottle in his mouth, but who can argue with success? He’s taking in about 3 ozs of formula/cereal every 3 hours now. The IV fluids have been reduced to 3 mls per hour, which means he is getting hungrier and actually eating! They will continue to reduce the IV fluids every hour as long as his blood sugar levels stay above 70 – just to give you a point of reference, his IV was at 14 last night. The purpose is to wean him off of the IV fluids altogether. We are still watching the medication that is treating his hyperinsulinism and will know later this week if it will be the best one for him. There are other options but that is later down the road. The MRI is still scheduled for Tuesday or Wednesday of this week. I’ll keep you posted as to when it is as soon as I know. The endocrinologist has planned a meeting with the family for Thursday so that we can all sit down and talk together. I’m excited because it gives all of the special people in his life a chance to chat with the doctors and ask questions.

Ty’s still acting like a happy, healthy little boy! Everyone that comes to see him tells us that he is absolutely beautiful. He’s cooing, kicking his feet, smiling and is just plain happy – well until they prick his little foot to check his blood sugar. Please continue to pray for Ty and our family. We’ve made it over these hurdles and expect to soar on the wings of Angels from here on out.

God Bless You!

Ray & Denise Hammons

Let me start with this: GOD BLESS EACH ONE OF YOU FOR ALL OF YOUR SUPPORT AND FORWARDS OF OUR PRAYER REQUEST. I know many times we receive emails that have been forwarded to us from an unknown source and we disregard them because we don’t know the person that is being discussed. I know I personally have been guilty of this…guess what? NOT ANYMORE! I am getting emails from friends of friends of friends telling me that they are praying for my baby boy. Total strangers love my family and they don’t even know us. I call this God’s work at His highest!

January 5, 2009 – Day 9

I’m going to try and keep this one short cause I’m really, really tired. This morning Ty’s white blood cell count was down – lower than when we checked in the hospital last Saturday. It would appear as if his body is trying to fight off a cold or infection. So if you’re sick, thinking about getting sick, were sick or have been around someone sick, please help us protect Ty from any other complications. Get well and come back by when his white blood cell count is back up and in a healthy place. He started on a vitamin this morning because his iron is low. I was so excited last night because I thought we should be off the IV fluids by today but his blood sugar is still seesawing. He IS however eating pretty well. Ray & I had labs done so we can start another genetic test which will determine exactly where Ty got the hyperinsulinism. We’re unsure how long those results will take. His MRI is scheduled for Wednesday but we will not get the results sometime Thursday. The family is going to sit down with his endo dr. Thursday morning so hopefully between all of us we can learn as much as possible about Ty’s condition, long term treatment, etc.

Here’s a little story about how God works though – I woke up this morning with a list of things to do. Control Freak that I am, I was like the energizer bunny when I first woke up – I had a plan and I was sticking to it. Well by 9:30 I was already feeling overwhelmed. One of the things on my list was to call our Pastor. Guess who just happened to stop by at the exact moment I was having a pity party. Yep it was Brother Al. Great timing Lord! I had another little episode of feeling overwhelmed after a frustrating phone call with insurance. I hung up the phone and said some really ugly words that I should not have even thought much less muttered out loud. Then there was a knock on the door. One of the hospitals Chaplain’s stopped by. She told me that she’d received one of my emails and wanted to come see us. Funny thing: I DO NOT HAVE HER EMAIL ADDRESS nor have I ever met her! I looked up and thanked God again for hearing my prayers. Each time you forward our message along, God finds a way to let me know that He’s thinking of all of us and hearing all of our prayers. All I can say at this point to all of you is THANK YOU! Of course you know I’m going to ask that you keep it up but that goes without saying.

Tomorrow is a new day and it’s the Lord’s Day so we will rejoice and be glad in it.

Good night!
Ray & Denise Hammons

January 4, 2009 – Day 8 @ Cook

What a difference a day can make! We were moved from PICU to a room on a regular floor last night. Daddy & I are so excited because this room has a private bathroom. Yep you guessed it – I can now shower at the hospital without fear of flooding the entire wing.

This morning we woke up to a very pleasant surprise: Nana & Paw-Paw (Ray’s parents) came in for some special Ty time. They got to give me the news from the doctor today instead of the other way around. I know it was a relief to them to get to meet with Ty’s doctor and have some one on one time with him for themselves. So here’s the update: Today Ty is eating rice cereal from a spoon and bottle feeding pretty well. Tonight Daddy & I tricked him by giving him a bite then popping the bottle in his mouth, but who can argue with success? He’s taking in about 3 ozs of formula/cereal every 3 hours now. The IV fluids have been reduced to 3 mls per hour, which means he is getting hungrier and actually eating! They will continue to reduce the IV fluids every hour as long as his blood sugar levels stay above 70 – just to give you a point of reference, his IV was at 14 last night. The purpose is to wean him off of the IV fluids altogether. We are still watching the medication that is treating his hyperinsulinism and will know later this week if it will be the best one for him. There are other options but that is later down the road. The MRI is still scheduled for Tuesday or Wednesday of this week. I’ll keep you posted as to when it is as soon as I know. The endocrinologist has planned a meeting with the family for Thursday so that we can all sit down and talk together. I’m excited because it gives all of the special people in his life a chance to chat with the doctors and ask questions.

Ty’s still acting like a happy, healthy little boy! Everyone that comes to see him tells us that he is absolutely beautiful. He’s cooing, kicking his feet, smiling and is just plain happy – well until they prick his little foot to check his blood sugar. Please continue to pray for Ty and our family. We’ve made it over these hurdles and expect to soar on the wings of Angels from here on out.

God Bless You!

Ray & Denise Hammons

Let me start with this: GOD BLESS EACH ONE OF YOU FOR ALL OF YOUR SUPPORT AND FORWARDS OF OUR PRAYER REQUEST. I know many times we receive emails that have been forwarded to us from an unknown source and we disregard them because we don’t know the person that is being discussed. I know I personally have been guilty of this…guess what? NOT ANYMORE! I am getting emails from friends of friends of friends telling me that they are praying for my baby boy. Total strangers love my family and they don’t even know us. I call this God’s work at His highest!

January 2nd:

Day 7 in PICU:
Today we have been given a corrected version of Ty’s blood sugar issue. Yesterday I told you it was hyperinsulinemia however it is actually hyperinsulinism. Hyperinsulinism is an abnormally high level of insulin in the blood, resulting in hypoglycemia. He is being treated with medication for this and is responding favorably. The NG tube (nasogastric tube is a clear plastic tube that is inserted through the nose, down the back of the throat, through the esophagus and into the stomach that is used to feed a patient) was removed last night and Ty is now feeding from his bottle. This is slow going because the medication treating the hyperinsulinism suppresses his appetite. We are working towards feeding him 2-3 ounces every 3 hours. His blood sugar levels are tested after each feeding. When we left the hospital tonight for Mommy & Daddy decompression time, the blood sugar level was 65; normal blood sugar levels are between 80-100. The reason it was low is because he is not getting as much nutrition as before but this is ok. We are testing the different combinations of medication just to get them perfect. We are also regularly doing a hematocrit test. The hematocrit or packed cell volume (PCV) is the proportion of blood volume that is occupied by red blood cells. The latest levels were good and were up from the previous test. This tells us that his blood cells are reproducing and he shouldn’t need any more blood transfusion. An MRI is scheduled for Tuesday or Wednesday of next week to check the white matter of Ty’s brain again. The neurologist is hopeful that all of the white matter will look good however he is still very concerned about the frontal lobe. So to wrap this long email up – Ty is doing really good today and is acting like a happy baby. Let’s keep up the prayers!

Thursday, January 1, 2009 at 11:34pm

Day 6 in PICU:

We have definitely figured out the low blood sugar problem Ty has been having. The current diagnosis is hyperinsulinemia. Hyperinsulinemia is an abnormally high level of insulin in the bloodstream. Chronic hyperinsulinemia is most often caused by insulin resistance, a condition in which the body cannot use insulin properly. Insulin is a hormone necessary to move glucose (blood sugar) from the bloodstream into the cells for use as energy. Insulin resistance is a feature of metabolic syndrome and type 2 diabetes. Ty is currently on medication to regulate the insulin in his body and seems to be reacting favorably to this treatement. We will have to continue to do regular blood sugar tests to ensure that we are on top of it even once he comes home. The good news about this condition is that when it is diagnosed in children, they often grow out of it!

We are still trying to deal with the white matter disorder of his brain. The neurologist has scheduled a second MRI for the first of next week to re-evaluate the brain. It is our greatest prayer that all of this will go away and it can simply be called a medical mystery. However the doctor is still very concerned that the frontal lobe of the white matter has been affected and we need to get down to the bottom of what is going on there. A blood test was ordered to determine if in fact we are or are not dealing with Leukadystrophy as mentioned in previous updates. The results for that test will take about 3 more weeks.

Ty was taken in for a procedure last night to have a Broviac line put in to better administer medication and blood transfusions. BROVIAC® catheters are like central venous pressure catheters except that they are made of a soft material called Silastic and have a cuff on them. The catheters are tunneled under the skin and come out away from where the catheter enters the vein. This procedure went very well and is a blessing for Ty - he no longer has to keep getting stuck when his little veins quit working with the IV's.

Last night we discovered that he has lost quite a bit of blood and was spilling it in his stool. A Meckel's scan was done this morning to determine where the blood was coming from. This is an investigation in which pictures of your abdomen will be taken with a special camera after you have received a small injection of a radioactive material. The test came back negative which means they were unable to detect where the blood came from. Another blood count test was done this morning after the scan and his blood count seemed to be ok so it was decided to hold off on any other testing and see if he continued to loose blood. He was given a blood transfusion last night and then again this morning. We do not think he'll have to have anymore transfusions but we are asking our family to be typed so that we can have a match with blood on reserve for him if necessary. It is believed that the main reason he has lost so much blood is because we were having to take so much to test his sugar levels. His blood was being tested every hour on the hour and sometimes every 10-15 minutes. His little body just couldn't keep up. So the fact that in the last 12 hours we have not detected blood in his stool is GREAT news.

In the mean time, Ty acts like a healthy baby! He is cooing, smiling, wiggling and in general is just plain happy. He simply refuses to act like a sick baby - he's very stubborn, just like his Daddy!!! I wish I had brought my camera home with me tonight so that I could have posted some new pics with this email but I'll do better next time, promise!

I want each and every one of you to know that the love that is being shown to this precious little angel and my family is powerful. Every moment of every day has been spent praising God for what he is doing with our family. We ask that you continue to do what you are doing and know that it means more to us than we can ever tell you. If you are local and can/want to come by, please feel free to get in touch with us to do so. Ray and I leave the hospital for a couple of hours at a time so that we can decompress...I come home to take showers because in a moment of blonde maddness I almost flooded the bathrooms by putting a towel down in the shower so I wouldn't have to wear my flip flops...bad move but I'm such a clutz I had to try.

Last but not least - if you are reading this blog and have a relationship with any of my other 4 babies, please do not discuss this with them. We are giving them age appropriate information at this time. If you have any questions, please either ask me or your parents. To all of my chosen kids, I love you and welcome your questions - email, call or text - I will do my best to help you support my kiddos through this time too.

May God continue to bless each of you for the support you are showing all of us!

Denise

Monday, December 29, 2008 at 8:50pm

We really appreciate everyone's diligent prayers and ask that you continue to lift Ty up to God. At this moment we know the seiziers were due to low blood sugar. He is producing too much insilin which causes his blood sugar to drop. This condition can be treated with medication. The hypoglosemia sympotisms are secondary to the most difficult contition that was discovered. The MRI from yesterday came back with some particulary disturbing news. The white matter of Ty's brain(the matter directly under the grey matter of the brain which is considered the brain's 'superhighway') is sick. The initial diagnosis is Leukodystrophy. The leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient. From what we have been told, this condition is very serious with a life expectancy of a couple of months to a couple of years. There are a team of doctors working on answers and treatment plans. His films have been sent to a neurologist in dallas that specializes in white matter disorders. While this diagnosis is not 100%, there is definitely something going on with the white matter of his brain. As you can see, we have more questions than answers but I feel like that is more of a positive thing. At least we can rule out lots of different things and can keep searching for the real diagnosis. In short, Ty is very sick. It looks as if we are going to be in the hospital for a pretty good while. Having said all of this, we beg you to continue praying. We are offering my son up to the Lord and asking that His will be done. I was told today that by sending one message for prayer request resulted in 250 people from the USA to Africa to pray for Ty. Now that's only one major prayer line! Please continue doing what you are doing for us each day. And again, I will update as soon as I can.

Please everyone keep Ty in your prayers. Saturday night he began seizing around 11pm and it lasted about 30 minutes. We rushed him to the children's hospital in Fort Worth. After getting there he had another major seizier that lasted a bit over an hour. For the last 24 hours he has had many, many tests to try and figure out what the cause was. At this moment the culprit seems to be low blood sugar. The doctors are trying to determine what has caused this and are working to maintain the sugar levels in his body. We will be in PICU for at least one more day possibly two before he is moved to a regular room. We expect him to be in the hospital through the week. I promise to post more information when I can get back online.

Many thanks and love!

Denise

Date: Monday, January 26, 2009, 12:12 AM

Friday was both a blessing and a curse for us. We were told that we are heading to Philly within the next week to week and a half - which IS a good thing. However Friday was a very tough day for Ty. As I mentioned, his blood sugar was all over the place. What I didn't mention was that because it was fluxuating so much, he could have easily slipped into a coma. The doctors and nurses were ever viligant with him all day and night Friday and Saturday. He had another chest XRay on Friday night because the staff heard wheezing in his lungs. The results came back that there was 'gunk' in his lungs which could lead to phneumia. By Saturday afternoon he seemed to take a huge turn for the better - better blood sugars and no more wheezing. The blood sugars for the last two days have been a little more consistant. We are just biding our time until we can get to CHOP's to get the ball rolling on making some serious changes to his condition.

We've spent the last two days ironing out details for where Sam and Nick will be while Ty & I are in Philly. All four of the big kids have had a chance to spend some time with us here at the hospital this weekend. They are all very scared and worried about their brother. Please pray that they have peace and understanding during this trying time.

Tommorrow will give us some answers as to when, where and what to expect. I know you are all wondering just as much as we are. Please pray that Ray's job continues to be supportive during this time and that he have a job to go to at the end of the day. We are both very concerned given the economy and the oil field industry.

A friend of my Mom's sent me an email titled "GOD HAS A POSITIVE ANSWER". I've spent the last few days reading some of the verses it references and highlighting them in my Bible. I want to share one with you today - Ray and I have said over and over to one another "I am afraid". II Timothy 1:7 says "For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline." Please pray that we rememeber that we do not have a spirit of fear.

Ray & Denise

Date: Monday, January 26, 2009, 10:33 PM

Today has been a day or trying to get everything lined out for Ty to leave for Philly. We got some good news last night - the test for adreanal lukadystrophy came back negative! The neurologist is still concerned about the white matter of his frontal lobe but only time will tell us if there was any permanant damage. We are asking for a second opinion while at CHOPs. Today we were told we will leave either Thursday or Friday. Arrangements are being made by the staff here - it all takes time working with insurance companies!

Gwen, Sam, Nick & Becca are now realizing that we are really leaving. They are all freaking out in their own ways...please keep them in your prayers!

Today I found scripture that makes me stop and think - Luke 12:22-34. I'm not going to quote all of it but just this...in my Bible it is titled "Do Not Worry"...31-32 "...seek his kingdom, and these things will be given to you as well. Do not be afraid, little flock, for your Father has been pleased to give you the kingdom." Please read the entire passage to see where we are deriving comfort today.

Thank you for your consistant support and prayers. As a family, we would not be able to survive this crisis without the help of Jesus Christ!

Ray & Denise

Day 32: January 27, 2009

We found out today that Ty will have to have a bone marrow biopsy to try and find the cause to his neutropenia. This procedure will be done at 11:30 AM on Wednesday. He will be put back under anesthesia and will be given pain medication as this procedure is very painful for adults - much less babies.

We will be leaving Thursday morning at 6:00 AM to head for CHOPs. I will be able to ride with Ty on the med flight. Ray will follow up on Sunday and stay for two weeks. His job has required him to take another unpaid medical leave of absence in order for him to go. Please continue to pray for that situation.

Something good IS coming out of all of this. My daughter, Gwen, has been searching her Bible daily to send me encouraging verses. For Christmas this year her Dad and I gave her a New International Bible-Teen Edition. This is an excerpt from an email she sent me..."This is straight out of my bible and all that is going on I thought this was

completely appropriate.

Worrying isn't to much fun. Test coming up? You get cramps and a cold

sweat. Mom goes to visit grampa? You lie awake wondering if her plane crashed or

of a hurricane will strike where she's visiting. Peter has a suggestion for

worriers: let god worry about it for you. "cast all your anxiety on him

because he cares about you" (1 peter 5:7) study for your test. But after

that, let god do the worrying. Hug mom and wave good-bye. Say a prayer and let

god take over. If you are peaceful you'll do better on the test and sleep

better too.

(1 peter 5:7)"

I love my kids!

Please continue to lift this family up as we are holding steady to our faith - no matter how difficult it seems the days are getting. (Look for an update from Philly!)

Ray & Denise

Day 33: January 28, 2009

The biospy came back with good news - his neutraphil count is coming back up and can be blamed on the fact that the medication he was taking took a hit on his marrow. He's not in much pain, tylenol seems to take the edge off.

I just said goodbye to my two babies a few minutes ago. Thank you Amanda & Jeff for taking good care of them while we're gone. They'll be spending time with their Maw-Maw & Paw-Paw, and Aunt Tricia & Uncle Ben while we're away. I just thought leaving Ty in NICU was tough - telling those two angles bye was pretty darn tough, I'm not going to lie. I miss them already.

I know Ty & I will be in good hands, as well as the other children, but please remember the big kids in prayers.

We've been spending the afternoon packing up our second home for the last 33 days. Wow pulling pictures off the walls - all of which are in my in my brief case to go to Philly - this room is looking pretty bare. Ty's new room will get a home make over when we get there!

I'm signing off for a couple of days since I know tomorrow will be a full day. I'll check back in with everyone once we get settled - hopefully I'll feel that way by Friday night. Ray and Mom will follow us up there on Sunday. Thank God I have a cousin that lives only a few miles away - he's going to be there for me tomorrow. We also have extended family that is already planning to come and take care of us too...thanks to Mom's friends! I can't wait to see y'all!

God Bless you all for your prayers, the rest of the journey is about to begin. The updates will continue but we'll see you when we get back to Texas.

Joanne, your 'positive answers' is coming into use today - "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5-6...honey thanks for this one (all of them actually but this one is definitely hitting home today)

Ray & Denise

Day 44 (Philly 11): Sunday, February 8, 2009

Ty has been in NICU recovering from surgery since Friday. I was able to hold him around 4:30 AM on Saturday morning for only a couple of minutes - it was very obvious that he was in great pain. Today however I got to hold him for over an hour - that's the attached picture.

Our little man has such a tough disposition, he is bound and determined to get out of his bed and back in his swing as soon as possible. Everytime we get his straightened in bed he wiggles his way back to getting cockeyed again. Right now his pain is being managed by medication but he is on a very low dose...again, strong dude. The g tube in his belly and nose are doing their jobs keeping all of the gastric juices out of his tummy and the surgeron stopped by today to say that the tube in his nose will come out tomorrow. I know he will LOVE that! Ty is still getting nurishment through his IV and will continue to do so for several more days. We still expect him to spend two weeks in NICU. We do not have any idea how his body is going to react to the 5% of pancreas that is left but the great news is that his blood sugar has stayed at a very healthy, steady level.

Yesterday my sister's friend from the Marine Corps took us around to 'play tourist'. We had a speedy view of the steps from the movie "Rocky", saw the Liberty Bell, City Hall, Boat House Row, Independence Hall, ate a slice of pizza on South Street and had a Philly Cheesesteak at Jim's. It was a whirlwind tour but lots of much needed fun - THANK YOU MELISSA!

My cousin in Austin is selling Angels for Ty. If you are interested in finding out more, please let me know. She has been working hard on this project for the last couple of weeks.

I cannot say thank you enough to the numerous people that have touched us while we are going through such a tough time in Ty's life. From trying to raise money to help us pay our bills, to buying pillows for Ray to sleep better, to bringing Dr. Pepper to the hospital, to sending friends and church family to see us - the support is unending. God certainly has a way of sending people in our lives to continue to encourage us to be faithful and show us that He is in control and will make things happen for us. Again, thank you for all of the prayers and support!

God Bless,

Ray & Denise

Day 44 (Philly 11): Sunday, February 8, 2009

Yesterday my sister's friend from the Marine Corps took us around to 'play tourist'. We had a speedy view of the steps from the movie "Rocky", saw the Liberty Bell, City Hall, Boat House Row, Independence Hall, ate a slice of pizza on South Street and had a Philly Cheesesteak at Jim's.. It was a whirlwind tour but lots of much needed fun - THANK YOU MELISSA!

My cousin in Austin is selling Angels for Ty. If you are interested in finding out more, please let me know. She has been working hard on this project for the last couple of weeks.

God Bless,

Ray & Denise

Day 49 (Philly 16): Friday, February 13, 2009

As a couple of you have pointed out, I guess I've been slacking a bit, sorry!!! We've had our hands full for the last couple of days with Ty - it's been GREAT!!!

I shared with you on Tuesday that Ty is feeling better. Better today is an understatement! He's doing so good it's amazing. This little boy is rebounding from his surgery like a real champ. The last couple of days have been full of talking with speech therapists, doctors and physical therapists. We are working on getting him up and moving in a positive direction. Since Ty hasn't been on his tummy since 12/27, we asked that PT come work with us to make sure we aren't doing anything to hurt his tummy. They spent an hour with us yesterday and another hour with us today showing us how strong our little man really is. They are impressed with his ability to roll side to side, hold his head up and the strength in his neck. All things considered, he has not lost too much ground developmentally due to the surgery, etc. They will continue to come by and work with him on a regular basis until we feel comfortable. Both Ray and I worry that we are going to do something to hurt the little contraption holding the tube into his belly.

The only thing Ray and I are concerned about is that he has not started eating yet. He is still producing too much bile fluids, which are draining from his stomach from the g-tube. We have been reassured by the surgical team that this is completely normal and each child recovers at his own pace. It is not unusual for a child to still be draining this long after surgery. Ty is still getting his nourishment from the IV therapy. We hope that the secretion will stop soon so he can eat - that's all we are waiting on for bottle/tube feeding of formula to begin. Once he comes off the IV therapy completely and is totally dependent on formula we will learn more about how his blood sugar will be effected. So far it has stayed consistent. Today they changed the blood sugar checks to every 4 hours - this is a huge improvement from every 2 hours!

The last couple of days we have been eating up the smiles, coo's, and flirting our little man has been doing. His Daddy even got him a 'little black book'. It's hanging on the outside of his crib along with a sign asking his nurses to put their names in it - we want Ty to have a fun memory of his trip to CHOPs. The nurses have gotten a kick out of it.

Several people have asked about the angels that have been mentioned before. My cousin in Round Rock is selling angels for Ty. If you are interested, please feel free to contact her. Her name is Angie Johnson and her number is 512-740-6096 or . Angie has also set up a myspace page for Ty if you're a fan of myspace. Here's a link to his page: www.myspace.com/andrewtyhammon. Feel free to check it out and add yourself as a friend. Angie has lots of plans up her sleeve for this little guy and others like him so keep an eye out for more things to come.

Thank you everyone for your patience in my lagging behind. I know the lack of information from this front concerns you, especially when I've been diligent in sending out updates at least every 2 days. Ray leaves to go back home tomorrow so I'm sure I'll have more time on my hands to get on the computer.

All of our prayers are being answered - just please remember to ask that God's will be done!

Ray & Denise

Day 51 (Philly 18): Sunday, February 15, 2009

This weekend has been bittersweet. Ray left to go home Saturday but got to have all four of the big kids home with him. I told him that I'm jealous because he got to hold them, kiss them, hug them, smell them and just love on them! I miss them so much. It was harder than I thought watching him go home. The sweet part of my day (aside from all the smiles and coo's I get from Ty) was that I had the pleasure of meeting my new friend Kathy's children. She has 3 beautiful older children ages 10 to 12 - close to my big kids ages. I hugged and loved on them as if they were my own. I know they probably thought, 'that crazy woman from Texas, why does she keep hugging me?' Oh well at least I had some big kids to love on! When I got back to the Ronald McDonald House last night I cried. I cried for the injustice of what my family has to go through, the days we have been separated, the fact that our baby is sick and has spent the last 51 days in the hospital, just all of this!

The other difficult pill to swallow was that Ty had a little set back. I mentioned before that we are waiting for him to stop producing so much bile so that we can start feeding him again. Yesterday they clamped him off from draining as a test to see how he could do. He didn't pass - within a couple of hours he threw up about 20 mls of bile. He was hooked back up to drain and we will continue to watch and wait. Tomorrow he will go for an upper GI test to see if there is a blockage somewhere or if there are adhesions that have formed from surgery. Let's pray that it's nothing and the vomiting is his body's way of telling us he's just not ready to eat.

My Mom has been here with us since the 1st and is now on her way to New York for three weeks. The good news is she should be able to come back to spend the weekend with Ty and me! Now is the time it gets tough - not having either one of them here with me to keep me distracted.

Obviously today has been hard - I found this scripture that helped me - Hebrews 13:5-6"..."Never will I leave you; never will I forsake you." 6So we say with confidence, "The Lord is my helper; I will not be afraid..."

I cannot promise not to share my sorrows with you again but I needed to get them out tonight. Another new friend, Lisa, was with me when Mom left and kept me from having a meltdown. She told Mom that she will be here to check on me, along with my friends and family here in PA. Even when I was feeling pity and feeling alone - there were people around to remind me that not only do I have friends here, God is still watching over.

The picture you see is of my little man playing with his nurse. He was getting his IV fluids changed and the nurse decided he should dress like she does when everything has to be replaced. Behind the mask he has such a cute smile...you can see it in his eyes.

God Bless you for your prayers!

Denise

Day 52 (Philly 19): February 16, 2009

Today Ty had quite a full day starting with tests at 8:30 AM and ending with surgery at 6:30 PM. He went for an upper GI as mentioned yesterday where they took a look at his upper GI tract.

Upper GI tests use X-rays to examine the esophagus, stomach, and first part of the small intestine (the duodenum). For these tests, a person is required to drink barium. As the barium passes through the digestive tract, it fills and coats the esophagus, stomach, and first part of the small intestine making them more visible with X-ray. Then a fluoroscope machine is held over the part of the body being examined and transmits continuous images to a video monitor. They were looking for any blockage that could explain why he is still producing too much bile and cannot have his g tube clamped without vomiting. What they saw was that the barium was going through everything except the small intestine.

They then decided to do an ultrasound of the abdomen around 2:00 PM to confirm the findings of the upper GI test. The Radiologist had to take a look because the Radiology Tech could not see anything due to the g tube dressing across his tummy.

It was decided around 3:00 PM to take him for a contrast enema because they could not see any anything with the ultrasound. With a contrast enema, the colon is filled with a contrast material containing barium or iodine-containing contrast (a liquid that lights up on X-ray) by running it through a tube inserted into the rectum. The barium blocks X-rays; therefore the colon, when filled with the agent, shows up clearly on the X-ray picture. They found that there was an obstruction in his small intestine called an intussusception.

An intussusception (a blockage of the intestine) is a medical condition in which a part of the small intestine has invaginated into another section of intestine, similar to the way in which the parts of a collapsible telescope slide into one another. The part which prolapses into the other is called the intussusceptum, and the part which receives it is called the intussuscipiens.

At 6:30 PM Ty went in for surgery. Dr. Adzeck used the same incision site as from the pancreatectomy. In a surgical reduction, the abdomen is opened and the part that has telescoped in is squeezed out (rather than pulled out) manually. The surgery went very well and was very quick. While Dr. Adzeck was inside, he took a look at the duodenum and saw that it was still a little swollen from the first surgery but wasn't too concerned.

So now we start over with the road to recovery from a major abdominal surgery. Ty has the g tube back in his nose for drainage and the tube from his tummy is draining in a bag again. We will now be watching how much bile he is producing, how quickly it stops and how soon he will be ready to be fed again. Basically we're where we were 10 days ago after the first surgery. We'll be in NICU until he is off all the drainage tubes, IV nourishment and eating on his own.

Ray is at home now and struggling with the fact that he was not here with Ty for this surgery. Please pray that he can keep his mind focused on work so that he has something to distract him from all that is going on here.

I have a few special thanks that MUST be said now - Amanda, you and Jeff are doing a remarkable job with Sam & Nick. We cannot thank you enough for taking our children into your home and treating them as if they are your own. We love you and appreciate what you are doing for us! Lisa - thank you very much for the call at just the right time today, your prayer helped keep me calm in the midst of what I thought was going to be a long night of surgery!

Thank you to everyone else that continues to pray for us and lift our family up to the Lord. We are certainly surviving because of the prayers.

God Bless,

Denise

Day 55 (Philly 22): Thursday, February 19, 2009:

Today was a busy day. I know I haven't given an update in a couple

of days so first I must say Ty is doing GREAT! I am so pleased with the

progress he has made after his second surgery on Monday. One of his

charmed nurses had him up in his swing again today. He has been full of

smiles and has even started his flirting again. Silly boy! This

evening when I got back to the hospital he was doing belly crunches in

the swing trying to sit up more. This kid is something else! God is

doing such amazing work with this child and I am so happy to be here to

see what is happening in Ty's life. His story has touched so many

people it is hard to comprehend and I know it will continue for a long

time.

The reason today has been so busy is because I've been planning a

special trip for two of my babies with the help of a very dear friend

of mine. After sitting back yesterday and witnessing the fact that

the baby across the way from Ty in NICU

was going to die and was only hours old, I realized it was past time I

touched my other children again. I tried everything possible to get airline tickets

on short notice to get Gwen, Sam, Nick, Becca and Ray here for the

weekend. It just wasn't going to happen. My friend had enough airline

miles to get 3 tickets. I cried on the phone with Tricia last night

because I was so terrible torn about only having 3 tickets and having

to choose which kids got to come up here. She very firmly informed me

that Sam & Nick haven't seen their Mom in 22 days and need to be

the ones on their way here. So with that said, we are praying that we

can come up with enough airline miles or free tickets to get the girls

up here sometime soon. I need to see them just as badly. The Ronald McDonald House

generously offered to move me into a larger room that will accommodate

Ray, Sam, Nick & me and my cousins in Dresher offered a van for us

to use. Today was so busy because I was in the process of moving out

of one room into another, catching a train to Dresher (a new and

exciting experience for me) and driving back to Philadephia all in one

day. These people drive worse than I do! The good news is I made it

safe and sound and didn't get too lost getting back...just took a

couple of strange wrong turns. Blondie here found her way back out of

the scary part real quick! Our plan for the next couple of days is to

spend time with Ty at the hospital and do a little sight seeing while

the kids are here. I am just soooooo excited that I get to see them

again. After 22 days without them and only being able to talk on the

phone sometimes, I'm almost too excited to sleep!

Having said all of that, please know that I'm going to hold off on

any updates unless something urget comes up that needs to be shared. I

am going to enjoy the time with my husband and children while I have

them here. I can't wait to do it all over again when we find a way to

get my girls here too!!!

Thank you everyone for everything you are doing to help our family. God is hearing our prayers and making things happen!

God Bless,

Denise

PS - Ty was VERY interested in his feet tonight. This is a really good sign that he is recovering and acting like a normal 6 month old baby.

Day 60 (Philly 27): Tuesday, February 24, 2009

I know I'm a little

late in reporting on the weekend with the kids...sorry! I've attached a

couple of pictures. (JR one of those is for you ) Just a warning - this email is going to be a bit long but full of fun!

I'm not going to go in

order here because while I totally enjoyed the visit with the kids and

will tell you all about it - Ty had a success that needs to be shared

first. He started being fed formula last night!!! I got to give him a

bottle at 6PM for the first time in 18 days! He's starting out with

small amounts and building up volume based on his tolerance. By the

time I left tonight he was up to 45 mls (1 1/2 oz). At his noon and 3PM

feedings, he took the entire bottle without any problems. I didn't

have as much luck with the 6PM feeding. He wasn't too interested in

eating then and only took a small amount. The rest had to be fed

through his g-tube. The other fun thing that happened for Ty today is

that CHOP's Marketing Dept came and took tons of pictures of him. They

were looking for cute babies in the hospital that are very photogetic.

He was like a real celebrity! They are going to send me a cd with a

copy of all the pictures they took today. He was so cute but we already

know that about him!

So here's how the weekend went - I met the

kids at the airport and was a total mess when I saw them. I couldn't

believe I was getting to hug and kiss them after 23 days - thank you

Dewey for making that happen, Sam and Nick were so happy to be with me

again that it was hard to contain our excitement!

Let me say this before I launch into the fun

details of the weekend - I AM a D'Abadie, Guin, Brandin child without a

doubt. I decided to look at everything, and I do mean everything, as an

adventure. You'll understand as you read along.

My awesome cousins from Dresher offered me the

use of their minivan while the kids were here. As I mentioned before,

I took the train out to their house (a first time experience) to pick

up the van on Thursday. I was so worried about missing my stop I think

I drove the man beside me - who by the way couldn't speak a lick of

English and therefore could not help me - the conductor/ticket

collector, and the 2 young guys behind me completely batty because I

was so worried. The 2 guys finally took pity on me and helped me out.

For those of you that are like me and have never ridden a train - they

do not announce each stop in regular English. For some strange reason,

they have to announce each stop as if they have sludge in their mouths

and you cannot, absolutely cannot understand what is being said. Thank

God for the two guys behind me!

Let me tell you a little about the van -

it drove just fine - but Bret warned me, the speedodemeter and odemoter

did not work and it had 100,000+ miles on it...I was advised to just

keep up with traffic because when it appeared that I was going 20 mph,

that really wasn't the case. I did really well driving around (I

thought) and didn't get honked at too many times. The good news is the

gas guage worked!

I had to find a Western Union location after picking up the kids. Apparently Philadelphia is not big on Western Union.

We took a trip into what I would consider one of the worst

neighborhoods I have ever seen in my life to find this place.. At one

point I think even Ray was a little worried. I just kept telling the

kids, welcome to Philadelphia! Oh and stick close to Ray and me.

We ended up finding the Western Union inside a

Pawn Shop. The fun part of this one is that we got to meet Ken Shapiro.

He's a really neat man to begin with but after conversation, we learned

that he's an actor/producer. How cool is that? The kids got to meet

and talk to someone who has been in movies they either know about or

have already seen. (Ken it was really great to meet you!)

After running that little errand, we headed up

to the hospital for them to see their brother. Both kids had their

own reactions but were so very excited to see him. Ty just kept looking

at them and cooing at them like - where've you been? I've been

waiting for you to come play with me. They had a good time reuniting.

Saturday we started out the morning with a quick visit to their brother again but then headed to Reading Terminal Market

- an indoor farmers market with produce fresh from the field, Amish

specialties, fresh meats, seafood, and poultry, unique, hand-made

pottery, jewelry and crafts from around the world all in Center City

Philadelphia. It was a once in a life time experience for the kids and

me. We bought some spices, teas, candy and gifts for the kids'

Grandparents.

This is when the story really starts to get

interesting - we went back to the van in the parking garage to head off

to our next destination. After paying for parking at the booth (where

I had to put the van in park because I'm too short to reach out the

window to hand anything out), I put the van in drive and heard a loud

'clunk'. Then the van wouldn't move. Stuck. Not an inch. Ray started

telling me to hurry up because the gate was going to drop and I'd get

charged again. I just kept looking at him and saying I can't. He said

'just put your foot on the gas'. I said, "it won't move! I think I

broke the van!!!" We sat there looking at each other like one of us

was speaking alien or something. Anyway I tried putting it in park then

back and drive but nothing. I told him I thought I'd blown the

transmission...not a good thing! He got out and pushed us up an incline

into a handicapped parking space.

At this time I'm starting to panick. I said, "Do you think I should

call Bret now?" His response was something along the lines of "that

would probably be the best". I was freaking out to say the least. Thank

God Bret has a very cool demeaner, much like his Dad, and handled

things quite calmly with me on the phone. He asked where we were and

all I could tell him was that we were stuck in a parking garage and I

had no clue where we were. Then he got smart. He said, "Can I talk to

Ray?" The men did their man thing and got off the phone. Ray found out

our exact location and had me call Bret back so he could call a tow

truck. We waited for the truck and I started making arrangements for a

rental car. Again, I'm not the most calm person at this point and I'm

sure Hertz was ready to tell me to take a hike. Did you know that if

you don't have a major credit card then your credit report will be

reviewed before you can rent a car? Needless to say I broke down into a

blubbering idiot on the phone with the reservations lady telling her

that I had a baby in the hospital and 2 of my other kids were visiting

and that we were stranded, you get the point...idiot!!! Bless her, she

finally told me not to worry and to come on in. As we waited for the

tow truck, Ray & Nick started with the jokes. Leave it to those

two. The driver called when he got to our general location and then

the questions of 'where exactly are you' began again. Here we go! He

very quickly informed me that the tow truck could not come into the

parking garage and we'd have to get the van out of the garage in order

for them to get it on the truck...hmmmmm more fun! So we buckled in

the van, Ray and the driver started pushing, and the the driver yelled

to Ray, "Jump in man!" Sam was worried and kept saying, "oh no, oh

no, oh no." Nick was just being Nick and cracking up at his mother and

his sister. Needless to say we made it out safely, caught a cab to

Hertz and rented a car. All this after I am apologizing all over myself

to Bret.

Our next stop was South Street which is a very

eclectic street with restaurants, cool shops and just a very different

atmosphere. We had pizza at Lorenzo's, bought a couple of t-shirts and

got Ray an Eagles hat. No trouble with the car but I was harrassed

unmercifully by the men in my life.

We made it to the LIberty Bell

just as the gates were closing. We were let in because I'm yelling at

the park ranger begging to let us in. That was a cool thing to see and

read about. We then took a horse drawn carriage ride around the

Historical Area and had a good time. As we were standing in front of

the carriage to take a picture, the horse decided my elbow would be

tasty and bit my arm! No kidding! All I could say was, "he just bit

me!" That wrapped up the end of the day. We'd had all the fun we could

stand and decided it was time to head back to the Ronald McDonald House.

We started again on Sunday for more fun. We went to Isaiah Zagar's studio, stopped at Penn's Landing, Independence Hall and ended the day by eating at the Hard Rock Cafe.

What a weekend! I can't wait for the girls to come (if Ty's still here) to see what kind of adventures we can have. By the way, I learned last night I properly diagnosed the van - it was the transmission. Maybe I should become a mechanic.

The best, best, best part of this story is

that through all of the bumps and scares - no adventures - we learned

that God DOES provide! Without knowing the circumstances of our

transportation challenges, a friend of my Mom's gave her money to

donate to our family. Mom called me Saturday night to ask how much the

rental car was going to cost. When I told her how much I was quoted,

she cried. She said, "Bob gave me some money today for y'all and I just

looked at how much it is...you won't have to pay for the car baby, it's

more than covered now."

Thank you for the blessings we recieve Oh Lord, even when they come in the most unexpected ways!

God Bless,

Denise

Day 62 (Philly 29): Thursday, February 26, 2009

I want to share so really, really good news with all of you and ask that you pray that this will definitely happen.

Today the surgical Nurse Practitioner

informed me that Ty's surgeron is releasing him to go back to Cook

Children's after the weekend to finish recovery and such with Dr.

Thornton. They want to keep him through the weekend but are starting

the process of arranging transport back to Texas. If all goes well and

Ty cooperates, I expect that we will be back home (the hospital) by

Wednesday. We're not telling any of the kids because Ray would like to

surprise them the day we arrive.

Please pray that all goes well through the weekend, Ty tolorates

his feeds, comes off his IV nutrition and we can get home soon. I know

with all our prayer warriors on this we'll certainly make it back quickly!

I love all of you and appreciate all of the support our family has had while we have been here.

God Bless!

Denise

Day 67 (Philly 34): March 3, 2009

Well we're still here.

Friday Ty was moved from NICU back to 8 South into the same room

we were in when Ty first arrived. Things have been going good while

we've been back on this floor. I've become very comfortable setting up

and feeding Ty through his tube when he is finished taking his bottle

(he will take anywhere from 20 mls to 55 mls of the expected 110 mls by

mouth), flushing the tube and taking his blood sugar.

All of these things will most likely be part of or normal routine once

he is out of the hospital. The only thing I have trouble with is

changing the holister around his g-tube. The great comfort that I have

with that is the g tube will be changed to a button sometime soon - he

should not go home with the tube.

God willing and weather cooperating, we should be on the plane

home tomorrow. I learned today that Teddy Bear Transport will be

coming for us in the morning barring any medical emergency

that should arise overnight.. So please pray that all is well through

the night and they will be on their way for us tomorrow. I know I am

ready to come home - Gwen, Sam, Nick & Becca are past ready!

We will be transferring back to Cook Children's for Ty to continue recovery but we will be back in Fort Worth!!!! I hope to be emailing you tomorrow (or the next day - I may need a night to recoup) with an update about the flight.

Denise

Day 72: Sunday, March 8, 2009:

WE'RE HOME!!!!

Mr. Ty Hammons is back in Texas. He's so happy to be back in his own city - well at least his Daddy, Mommy & siblings are happy. We were flown back to Cook Children's on Wednesday afternoon - arrived around 8 pm. The welcome we received from the nurses, doctors and other staff over the last couple of days brings tears to my eyes. Everyone here has kept up with Ty through these updates so it was as if they never skipped at beat with him...except that they were all amazed at how well he looks. He's had so many sweet comments about how chubby he's gotten, how much hair he has now and of course they all missed his smiles!

The last couple of days he's been acting silly. His blood sugar varies from 101 to 42 depending on the situation. He will have his first real test tomorrow. They are going to try a fasting study on him to see exactly how long he can go between feeds before his blood sugar drops to an unsafe level. The other topic on the horizen is how quickly he can have the g tube replaced with a button. I am supposed to talk to the surgeron tomorrow about when that can happen. He was started on enzymes yesterday which are necessary to help breakdown the fat, etc. in is food due to the fact that he had so much of his pancreas removed. He has also started with OT & PT here to continue working on all of the muscles that have not been developed or stimulated like a normal 6 month old baby's. The next couple of days should give us some answers as to what life will be like post surgery.

All in all Ty's general attitude is the same - just a sweet little man that is so happy most of the time. He loves anyone coming in to talk to him or play with him. Needless to say he's gotten spoiled! We hope to only be here another week and are simply waiting for answers. Feel free to come by and see us anytime!

This passage was shared with me by another mom with an HI child:

"But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall." Malachi 4:2

I would also like to share with each of you something very special that has been going on since the beginning of Ty's diagnosis. A non profit organization has been formed called Children Against Hyperinsulinism as a result of Ty's condition. This is not the only organization that supports HI and is in the early stages of development but the mission is simple - to support families of children with HI in every possible way. Please visit the website at www.childrenagainsthyperinsulinism.com. We are looking for people to help with this organization in any capacity. If you feel you have something to offer, please let us know. In addition, several events are being organized to raise money on Ty's behalf since it will be a long recovery for my little man. Please look for upcoming dates in my future emails.

Thank you again for all of the love, support and mostly prayers! Ty could not have made it this far without all of you!

God Bless,

Denise Hammons

Day 72: Sunday, March 8, 2009:

WE'RE HOME!!!!

This passage was shared with me by another mom with an HI child:

"But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall." Malachi 4:2

Thank you again for all of the love, support and mostly prayers! Ty could not have made it this far without all of you!

God Bless,

Denise Hammons

Day 84: Friday, March 20, 2009

Ty is home - his real home, the home he was in before he decided to scare us silly, the home we brought him to after he was born, HOME home!

Yesterday Ty was discharged from the hospital after he played movie star for the Volunteer Appreciation video at the hospital.. He wore a grass skirt & lei for the Hawaiian theme thank you to all the hard working volunteers. He was really cute - I hope he makes the cut.

After we got to the house, the Home Health nurses visited to deliver his Oceotride shots and do an assessment on Ty. They had already heard that we were doing everything for him before we left the hospital and were very impressed with how well we've adapted to all that comes with caring for a baby with Hyperinsulinism. Thank God Big Momma came back on Tuesday, it's going to take all three of us to get used to what an entire staff of nurses did for him while hospitalized. We're on a very strict and regimented schedule of checking blood sugar, decompressing him (burping him through the g tube), giving meds (he has to have enzymes every time he eats in addition to other meds) through his tube, and feeding him every three hours. We even have printed instructions hanging on a dry erase board hanging next to the refrigerator so that we can all keep it straight. Our first night went pretty well with everyone taking a shift except Daddy slept through the 3 AM alarm and was ribbed all day today for it. Good thing there's 3 of us right now.

Today Amanda & Presley came to play with Ty. Amanda and her husband Jeff played an important part in taking care of our family - Samantha and Nick stayed with them while Ty & I were in Philadelphia and when we returned. Ray & I cannot find enough ways to say thank you to this couple. They took two of our kiddos into their home and took care of them like they were their own. Out of all the pictures I took of the two babies playing together, this one was my favorite...Ty's holding her hand.

This evening we had our first practice run for going out of the house. We packed the diaper bag with D10, 2 syringes, the glucometer, Ty's emergency Glucagon shot and a bottle of formula...not the typical baby diaper bag, huh? All just to pick up dinner. Later this evening we had another run to see just how well we perform under pressure. Ty's blood sugar at 9:00 PM was 44 and we managed to get it back up to 86 within 30 minutes. The clown patrol (Mom, Ray & I) had our second round of craziness when one of his feeding tubes came unattached. I felt something wet while I was rocking him to sleep, checked and didn't see anything. When I got up to put him in bed, oops all this yuck was running down my leg. Just think of a big spit up only it was coming out of a tube. We got Ty cleaned up, hooked back up and settled back down all within another 15 minutes. This kid is determined to keep us on our toes!

Our next outing is scheduled for Sunday - we are planning to go to church. I don't think we're totally up for Sunday School yet but we're certainly going to try to make one of the services. I'm ready! I've missed hearing Brother Al's sermons!

Thank you everyone for your prayers - they've gotten us home. We do ask that you continue to pray for Ty, he's just not quite out of the woods yet. We're still watching him very, very closely.

God Bless,

Ray & Denise

Friday, March 27, 2009

We've been home a full week now and what a week it's been! I've had several people ask me for an update on Ty and realized I've failed all our friends out there that have been praying and reading our story. So again, I'm back at it to let everyone know our little man is amazing!

We are so thankful that Big Momma was here with us when Ty came home again. If not for her I think Ray and I would have colapsed after only 24 hours. I'm happy to report that our first real outing Sunday morning was a success. Brother Al asked us to stand so that everyone could welcome Ty home. I learned later in the week that not only did he mention Ty in the early service, he shared with the second service that our little man was home. I have to say I am so glad to be a Wedgie! Our church family has been so supportive and have kept us in their prayers daily. Thank you Wedgewood Baptist Church, through you and others God has answered prayers!

We bumped along the rest of the weekend and first of the week with a few ups and downs in Ty's blood sugar. Several times we had to do rescues of D 10 to get him back up to a safe level but again the little man rebounded quickly - no emergency shots necessary. Tuesday marked a slight change in his schedule and I think we are finally adjusting to it. Ty is now eating baby cereal three times a day and taking about 6 ozs of formula at each feeding...he's getting little dimples on his knuckles. I learned mid week that our insurance allows for private nursing and we had a nurse start today. I cannot tell you how much it helped having her here with me. We had to take Ty to the peditrician's office because he has the sniffles, sneezing and coughing and she was a total asset. I wasn't terrified to leave the house with him or constantly worrying about the what if's. The good news is that we don't have to do anything for him because he's fine but the not so good news is he has to see the surgeon next week. He has granulation tissue around his g button that is getting worse (we were treating it as we left the hospital last week). I believe they will do a slight procedure that will burn the tissue to keep it from growing - if it's something else I'll certainly share next week.

Something very special happened this week that I feel is just another page to our family's testimony. Wednesday evening while I was cooking dinner the doorbell rang. Big Momma answered and called me to come over - there was a lady offering to clean the carpet in one room of our house at no charge and with no obligation. Unsuspecting girl that I am, I said sure! Who doesn't want a room in their house cleaned at no charge? I told her that the door was open to just let herself back in and went back to cooking. Next thing I know there is a man in my house with a vacuum cleaner in a box. At this point my radar was going off and I was thinking, "good grief now I've done it, we're in for a sales pitch." Of course the vacuum cleaner I'm referring to is a Kirby. Many of you have been through the demonstration I'm sure. I was very honest with Steve from the start and let him know there was no way we could afford to buy anything from him. He chose to forge on like any good salesman would do. I kept on cooking while keeping one eye and ear on what he was doing. Of course when he showed me exactly how dirty my carpet is, I was embarassed. But again I reminded him no matter how much I'd love to purchase the Cadillac of vacuum cleaners there way just no way we could do it. He continued. I offered him dinner-to which he declined, something to drink-to which he gratefully accepted and kept watching and listening. At one point I told Big Momma we could split custody of the vacuum if she wanted to buy one. She laughed at me and said it would never see her house. Naturally during Steve's visit to our house he got to meet Ty and hear our story. Upon leaving he told me he was going to see what he could do for us. We went to bed knowing we'd never be able to afford such a luxary nor would we hear from him again but thankful for clean carpets in the living room.

Thursday evening (about the same time of day) the doorbell rang again. Sam and Nick answered and yelled out for me to come to the door. In came Steve toting a Kirby vacuum saying, "I have a gift for you." It took me a few seconds to register what he was saying before I burst out in tears and hugged the man with all my might. Both kids joined me in hugging Steve and said thank you with such awe in their voices. He told me that our family had touched his heart and when he shared our story with his boss they decided to donate one of their vacuums to us - no strings attached. All I can say is GOD LISTENS AND PROVIDES. Everytime I have felt lost, at a dead end, or scared God has opened the door. We have had so many people touch our lives in such a way that we can only say Thank You Lord!

We continue to learn everyday that we are not in control but that God is leading us where He wants us to go. He continues to put people in our lives that are either touched by us or we are touched by them. I am so very thankful for every opportunity we have to share His love and glory!

Thank you for everything all of you do (even by just reading our story). Our family has been so very blessed with the help of you.

God Bless,

Ray & Denise

3 weeks Home

We've now been home 3 weeks today! I'm thankful that we are in our own home it's hard to put into words. The last two weeks have been full of adjustments...Big Momma went home, the home health nurses have started, and we're actually starting to get into a routine. I now just face the challenge of trudging through the mess that was left in my house for the 83 days we were away. I certainly felt I made a dent last week but this one, not so much. Monday started the week off with a BANG! I got a call from the school nurse that Nick was in her office with a bum knee. After packing a diaper bag - something that now takes an hour to accomplish on a good day - I carted the boys off to the ER. Of course Monday would be a day I didn't have a nurse. Needless to say, we now have a gimp. Nick is in a leg immobilizer and on crutches for a week. God willing he will be back to normal by next week. After leaving the ER I had to take Ty to the pediatrician's office because he'd been running a fever over the weekend and was very cranky. After getting slightly scared from having to have chest xrays done, he was diagnosed with an ear infection. We've been in her office once a week since getting out of the hospital. When we walked in his pedi told him that if he wanted her to see him so bad he should have me send her pictures of him. I love her! The chest xray was just a precaution because he had a little rattle in his lungs and we can't be too careful with him. Today we had to have labs drawn for his follow up appointment next week with Dr. Thornton. What should have been a simple in and out at the lab visit turned into a three hour ordeal. Ty takes after his Mommy and is a hard stick. Thank goodness Dr. Dallas was in the office because he has the patience of Job and was able to get the all that was needed...not an easy task with a screaming 7 month old.

As I tell the kids, this is our new normal. Life in the Hammons home is definitely interesting but wonderfully blessed! Thank you for all of the continued prayers and emails. Even if I'm not sending out daily updates I know that we are being thought of.

PS - we got the pictures from CHOP's that the professional photographer took of Ty AND the video from Cook Children's volunteer appreciation dinner. My little man is quite the ham!

God bless,

Ray & Denise