Approval

We received a call a few days ago from Children's. It was a little bit bittersweet. Our insurance approved the stim test. It's nice to be moving forward but the next step is scary. The same time we also received a letter in the mail from the hospital going over the procedures and directions for the test. There's a lot to it. I read it while we had lunch together as a family and tears ran down my cheeks. Putting a 3 year old through this seems so traumatic. And it can be. I was so encouraged though. Why? Because what a great way to teach Liam about trusting God. He asked why I was crying and I told him it was because mommy is nervous but I know God is with me. He will protect us and be close. After praying for Liam, I feel like God has equipped me for this battle. I know God uses trials to draw us closer to Him and my desire is that He would draw Liam closer to Himself. 

Now we are waiting to schedule the test. Please continue praying that God would ready our hearts and the Hearst of the nurses.

Results!

About a week after getting the testing done we received a call from Liam's pediatrician. Everything came back normal except one of his growth hormone numbers was abnormal, the other was normal (more on the normal one in the next few paragraphs.) and his bone age came back delayed at 18 months of age. At this time his pediatrician recommended we go see an endocrinologist at Children's Hospital. We both immediately looked at each other and thought, okay we can deal with this it could've been much worse but at the same time, as parents our hearts hurt to think our sweet boy had something wrong with him. We made an appointment for six weeks and then waited and prayed.

Six weeks seem to take forever but finally was the day for us to go to the endocrinologist. The nurse weighed and got Liam's height. Re-measuring him 3 times to make sure it was an accurate measurement. We waited in the room for the Dr. and after just a few minutes she walked in. She introduced herself and we got right down to business. She got a very very detailed history starting from my pregnancy. She reviewed the blooodwork and other tests and then she remeasured Liam just to make sure the nurse did it correctly, which she did. She did a physical exam as well measuring his arms, legs, head etc. and then entered his stats in her database. She said there's a slight chance he could be just a late bloomer, which she has seen, but due to his bone age in the blood work she did not think that was likely. We could wait a few months and see if he grew but her recommendation was a Stim Test. She explained to us that growth hormone is produced only at night time so hospitals used to admit children at night for the testing and try and get blood throughout the night but because it would wake up the child these tests were not accurate. The stim test would show us the peak number of growth hormone Liam's body can produce without making him overproduce it. 

She explained that we would take him to an infusion lab in the morning, fasting, and they would give him a medication called Clonidine through an IV. They would then take blood samples every 30 minutes for 1.5 hours. Because it is possible to get a false positive they then give him a different medication called Argenine and do the process of taking blood again. So all together the test is about 6 hours depending on how things go. If the results show he does not have GHD then that is that and we will be done. The more possible outcome would be that the results show he does have GHD and then he would be required to get a brain MRI to make sure there is no tumor or anything else wrong with his pituitary gland which might be causing this. We talked with her for a while and decided this would be the way we would go. We didn't discuss treatment yet. We are now waiting to get the Stim test scheduled, which involves getting Kaiser to approve it. 

One thing at a time. This is a TON of information. My mommy heart has been put through the ringer and is a bit raw right now. But the thing I'm sure of. The thing I know with all my heart, soul, mind and strength. That even when I feel like the world around me isn't stable. My God is. He is! He IS. He loves me. He loves Liam. He loves my family and cares for us much more than I ever could. He knows suffering. He knows heartache. He lived it. He knitted Liam together in my womb and made him perfect. Mistakes don't happen. This trial is to be used for HIS glory. Use this for YOUR glory God. Please use us. My prayer!

As Time Went On

We always knew Liam was not going to be 6 foot. Daniel, my husband is 5'6 and I'm 5'3. So at his normal well baby  appointments when He was still not on the growth curve The doctor didn't seem concerned because he was still curving up. At his 2 year appointment The doctor mentioned he s seemed a little bit smaller but still didn't seem concerned. Danny and I started getting concerned when Liam was about 2 1/2 and seems so much smaller than his friends and other kids his age and his weight was not going up. Finally, at his three-year appointment his doctor put in his height and weight and this time was  concerned. Liam's curve was no longer going up, it was starting to level out. We discussed at length what to do and our options were to wait another six months and see if he was just a late bloomer, or do some testing to see if there were any diseases, genetic issues, autoimmune diseases, growth hormone problems or anything else causing this problem. We didn't discuss any one problem specifically yet since we weren't sure. Since I have Crohn's disease and hypothyroid he would be tested for those as well. At first we decided to wait because doing bloodwork on a three-year-old just seemed very very traumatic. Danny and I prayed a lot and we both felt God's pull not to wait for the testing. So the next day we called the doctor and went in and he was more than happy to order the test for us. These tests consisted of a urine sample, which was much more traumatic than the blood for some reason, he just thought it was NOT ok to go pee pee in a cup, lots of blood samples, which is the only part he still remembers- probably six small tubes, and an x-ray of his left hand and wrist. The blood work was testing for all his body functions, different genetic disorders, autoimmune indicators etc. the x-ray would tell the doctors his "bone age" what age his bones looked. In the next post I'll write about the results and the next part of the beginning of this journey.

Liam at 1 year

Our Journey Starts

Hello! I started this blog because I would love to bless and help someone else that is going through the rough and emotional journey of having a child with Growth Hormone Deficiency. Let me give you some background on Liam. He was born in January 2012 at 36 weeks gestation. He was 5 lbs. 7 oz. and so stinking cute. He was born with one ear folded over and one sticking further out but after hearing tests they determined it was only cosmetic and not medical. He was in the Neonatal Intensive Care Unit (NICU) for 7 days due to low blood sugar, apnea (stops breathing then starts again) that he developed on day two and not eating well. Due to the apnea the doctor ordered a brain scan because apnea can develop if brain bleeding occurs. They found no brain bleeding at all but said they saw a "variant of normal" on the right side of his brain. Yeah we we're not too sure either. They said we wouldn't know if something was wrong until he starts developing. Ugh. Not what you want to hear as parents. He was released from the hospital and came home with us and did really well.