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 seizures were due to low blood sugar. He is producing too much insulin which causes his blood sugar to drop. This condition can be treated with medication. The hypoglosemia symptoms are secondary to the most difficult condition that was discovered. The MRI from yesterday came back with some particularly 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 seizure 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 treatment. 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 madness 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 klutz 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

 

Friday, January 2, 2009, 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!

 

Sunday, January 4, 2009, Day 8 at 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

 

Monday, January 26, 2009, 12:12 AM

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!

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 vigilant with him all day and night Friday and Saturday. He had another chest X-ray 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 pneumonia. 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 consistent. 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.

Tomorrow 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 remember that we do not have a spirit of fear.

Ray & Denise

 

Tuesday, January 27, 2009, Day 32

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 too much fun. Test coming up? You get cramps and a cold sweat. Mom goes to visit grandpa? 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.

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

 

Wednesday, January 28, 2009, Day 33

The biopsy 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

 

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

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. Every time we get him 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 surgeon 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 nourishment 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, and 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

 

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

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 affected. 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, coos, 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 512-244-1994. 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

 

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

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." So 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

 

Monday, February 16, 2009, Day 52 (Philly Day 19)

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

 

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

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 Philadelphia 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 urgent 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.

 

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

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 photogenic. 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 speedometer and odometer 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 gauge 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 panic. 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 demeanor, 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 calmest 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 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 harassed 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 receive Oh Lord, even when they come in the most unexpected ways!

God Bless,

Denise

 

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

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 surgeon 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 tolerates 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

 

Tuesday, March 3, 2009, Day 67 (Philly Day 34)

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 holster 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

 

Sunday, March 8, 2009, Day 72

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 horizon is how quickly he can have the g tube replaced with a button. I am supposed to talk to the surgeon 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

 

Friday, March 20, 2009, Day 84

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 collapsed 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 has 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 pediatrician’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 what ifs. 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 embarrassed. 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 luxury 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. Every time 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

 

May 18, 2009, Home 2 months

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

 

August 19, 2009, Home 5 months

It’s been quite a while since I’ve written an update about Ty and the Hammons brood. I’m happy to report that Ty celebrated his 1st birthday on 8/11 and had his 1st party on 8/15. He had so much fun opening his gifts on his own (well with a little help from his sisters and brother). At one point I think he realized that there were more and he was waiting for the next present to be handed to him…it was so precious! Ty, Nick, Daddy & I had a bit of a cake fight but hey what party is complete without one?

Ty has grown so much over the last few months – he has his two bottom teeth, he’s been crawling now for about 3 weeks and has recently started pulling up on furniture. He gets a little overwhelmed because he wants someone to support him but we’re working through that under the guidance of his physical therapist. He is spoon feeding very well for a child with HI – we’re even offering him some table foods now. We just have to blend them up because he seems to have texture issues, again something normal for an HI kiddo and we’ll be consulting with a feeding specialist to work on it. He has an occupational therapist & nutritionist that comes to the house to work with him as well. He has quite a busy schedule for such a little one. We’ve settled into a very regimented schedule that keeps him healthy and his blood sugars as steady as possible. Every now and then he has a rough day but that is to be expected with any baby. We have been extremely blessed with one of the most caring, loving, wonderful nurses on the face of this planet. Her name is Charlotte & she has become such an important part of our everyday existence. Without her I know our days would not be quite a smooth as they are. We thank God for her everyday!

We’ve had only one major scare since he’s been home when we tried to take a road trip to Big Momma’s house. He got so sick in the car that we had to turn around and come back to Fort Worth. This excursion landed us in the hospital overnight because he wouldn’t stop vomiting. He had an upper GI done and everything came back clear so we chalked it up to either a bug or that his new reflux medicine had not started working properly. Now we’ve just decided to wait a bit longer before taking a road trip – maybe closer to hunting season ;-).

Ty had his follow up MRI the beginning of this month. While the MRI itself was uneventful, the night before & morning of were quite interesting. We had to stay overnight because he had to fast before the procedure and it was safer to do it in a controlled environment. After entirely too many attempts to start an IV it was decided that he would be put to sleep with gas and an IV started after he was in dreamy land. We got the results of the MRI this week. The good news is that the white matter of his brain IS changing for the good. (The original MRI in December concerned us because there seemed to be some problems with the white matter.) He still has an area at the back of the brain that hasn’t changed enough so it will need to be watched. The not so good news is that we learned Ty has a Rathke’s Cleft Cyst on his brain. This was on the original MRI but we were not told of it at the time because we had so much to deal with already. A Rathke's cleft cyst is a benign growth found on the pituitary gland; in most individuals with the cyst it is asymptomatic. We will learn more about this in September when we see the neurosurgeon. From what I understand this cyst is not a major concern as it has not grown in size since December. Ty does not show any signs of it affecting him in any way – that’s a good thing!

The rest of the crew is growing just as fast. Gwen starts high school this year. Tricia and I feel old just saying it out loud! Nick decided he wanted to play football again this year and Sam has started cheerleading. We’ve already had cheer practice four times a week for the last two weeks. Football practice starts the first day of school. And Miss Becca is officially out of elementary school. We’re all so proud of our four ‘big’ kids because they have adjusted so well to life with Ty. Each one of them enjoys their own special bond with him – it’s such an amazing thing to watch! We have the best kids ever!!!

Ray started a new job that has him away from home for two weeks at a time. He is now an OTR driver and has to report to the yard in Arkansas. This has presented a few new challenges for us but we are handling it pretty well. We all miss having him home everyday and he misses being home but we are grateful he has a job that is not as volatile as his last. His employer is very good to him and completely understands our family’s situation. In today’s tough job market we feel he is very fortunate.

I continue to stay home to care for Ty and play taxi driver for the other kids. I think this will be my lot in life until Ty starts school. We have made some great progress with the non-profit organization created because of Ty. Congenital HI Kids is already raising money to help other families that have been affected by this disease. We’ve been able to share information that we did not have when we first learned of Ty’s diagnosis. I will get to attend my first conference as an HI mom in September in New York. I’m excited that I will be able to meet other families and learn how they manage each day. I also hope to share our story and the journey we’ve been on thus far!

 

Please continue to lift our family up in your prayers. I know the Lord gave us this little boy for a very special reason. Some of those reasons have been revealed to us already and I know more will be revealed in time. Ty is truly an angel and quickly becoming one of my heroes.

God Bless,

Denise