Growth Hormones & "Pokeys"

When the nurse came on Monday morning the 27th of July we were excited and very nervous. She was wonderful. She brought everything to teach us and to do the shot on fake skin. It seemed daunting but after a few tries we both felt it was doable. Liam, wasn't too sure. She went over the locations on his body we could inject him (back of arms, right above his bum, his thighs and his tummy) and went over each step in the process. It seems like a long process until you do it everyday! Here are the steps:

- take the pen out of the fridge and collect all needed supplies-alcohol wipe, needle, pen, ***Spiderman Bandaid***.

-pull off cap and clean the tip w/alcohol wipe- set aside

-open new needle and screw onto pen

-dial the correct dose

- clean injection area with opposite side of alcohol wipe

-inject skin, press button and hold for 7 seconds

-Most important step to a 3 year old-Bandaid and putting sticker on his reward chart.

So that's it. The first two weeks it was hard for me to do but after that he got much better. He now (after only one month) prepares it all on his own and plays while we give it to him!!! He even reminds us if we forget to do his "pokey" as he calls it. We measured him the first day and at one month into the shots and he grew one whole inch in ONE month!!we are so excited!!!

UPDATE: I forgot to publish this! It has now been 3 months and 2 weeks since we started the Norditropin injections. We had an appointment at Children's Hospital in September with Dr. Travers, the pediatric Endocrinologist. At that point it had been 6 or 7 weeks and though we were super excited about the progress...she wasn't thrilled. Which was kind of annoying. She said that since it had only been almost 2 months she wasn't expecting too much and raised his dose from 0.4 to 0.45 and said we should come back in January to see if there's a huge difference, which she expects. That's fine, just a little disappointing, I guess we were hoping for a 6 foot 3 year old. 😳😎. Anyway, Liam is doing great! He's in preschool and on the low normal size for his class. He's doing so well. The one thing we are a little concerned about- night terrors. It's the only thing that has changed- symptom wise- since starting the GH. He has the about 3-4 nights a week and wakes up screaming and yelling "Nooooo!!!!" And it's very hard to calm him down and wake him up. But after a little while he does. They only usually last about 45 minutes off and on. Other wise he has not complained about leg or arm or hip pain.  He definitely looks a lot older! Here's a pic

Results and Good Things!

We received a call only 10 minutes after I talked to the nurse. Dr. Travers called  and explained that Liam has what is called an anterior ectopic pituitary gland, this means that the front of his pituitary gland is growing in the wrong place. This is what is causing his growth hormone deficiency. There were no tumors or anything else of concern seen on his MRI. Praise God!!! So the next step was to send her approval and diagnosis to the insurance company and get the GH started.....

We prepared ourselves, bumps are normal and would happen and the amount of time it would take to get the hormone would probably be longer than expected. 

We were correct, and that's ok! The insurance company was confused and at first we were told he would be starting a hormone called Omnitrope, but because our pharmacy insurance is different from our medical insurance the formulary for the correct pharmacy prescribed Norditropin. (This was more than a 4 week process of finding out and starting over) the companies, nurses and case workers have been very helpful. As of today (we are SO excited) the hormones are being overnighted for delivery tomorrow morning!!! Finally!!! God is so good. We now will wait for the nurse to call, she will come to our house to teach us how to give the injections!! 

The MRI

When I woke up to my alarm at 4am on the morning of his MRI is very out of it and turned off my alarm. I had hoped to give him some food since he couldn't eat at 5am, couldn't have milk after 7 AM and couldn't have anything after 11 AM. We were a little bit nervous that he wouldn't do well without eating. We Gave him a bunch of milk and he only asked to eat a couple times and seemed fine. We left at 11 and headed to Children's Hopital. 

When we arrived it was very exciting for Liam. He loves it there. At least the part before we check in. He rode in the wagon and we checked in and headed for the Radiogolgy Department. We checked in there and waited a few minutes (at this point Liam had already been given 3 new books to keep by 3 different people, the volunteers are awesome!) A nurse took us back to another waiting room where she had Liam change into a gown and pants. We waited there until the nurse brought us to the prep room. I was a little nervous at this point. She asked all about his history and health and then told us the anesthesiologist would be in shortly. Once he came in, he played with Liam for a few minutes then asked us more questions and gave us a run down of what to expect.

He showed us the mask, let Liam play with it and pick a flavor of Chapstick that they put inside the mask so it smells good and told us after about a minute Liam would be asleep. He did warn us that sometimes when their bodies and relaxing they jerk and twitch but that it was normal, just hard to watch for some parents (me). they would escort Danny and I out after he was asleep. They would then monitor him closely to make sure he was still breathing on his own and insert an IV to administer the anesthesia. They would then do the MRI  and come get us when he was in recovery. 

He put the mask over Liam's mouth and let Liam hold it. Liam was upset at this point and they told me to sing to him, I did and the nurse joined in. He immediately calmed down and started to drift off. When they told us to give our sweet, sleeping kiddo a kiss and then leave him there, I broke down and had a very hard time. I kissed his sweet face, so did Danny and we walked out. The hardest thing I've ever had to do. This is truly trusting that Liam belongs to God. And knowing for certain, God is His maker, protector, his everything. 

After getting lunch (Though neither of us were really hungry) we went back and say in the waiting room. After an hour the receptionist told us she would check in on things. She came back and said he was still in the MRI but the anesthesiologist would be out soon to talk to us. At 1 hour and 15 minutes he came out. He said Liam breathed on his own for the whole thing and everything went well on his end. (What does that mean? Well when it's your kid under anesthesia and you're freaked out, to a mom and dad that might mean something went wrong on the MRI end) we both read into it but waited. 

The nurse came to bring us back to recovery. It was scary seeing Liam so out and asleep still. He wasn't waking up as quick as an average kid would do the nurse started talking to him and trying to get him to wake up. It seemed to agitate him a lot and the whole waking up process was very hard for him. It took about 45 minutes and he was very agitated the whole time. Once he was aware and calm they released us. He was still very groggy and out of it. 

It took him a few more hours but he was back to normal! Around 4:15pm I called the office and asked if the results were in and the nurse said as soon as they were the doctor would call.

Faithfulness

I've noticed throughout my life, as God molds and sanctifies me, that when I'm in the midst of a trial, He's faithful before, during and after. I finally felt like He had given me the strength to get through the waiting by having joy IN the waiting. And what happens? We don't have to! This doesn't always happen, but it did this time. 4 days after the orders for Liam's MRI were given to Kaiser they approved it! We were told it could take a month and we were ok with that. God is so good!!! Does that mean that we think everything will go like this? No, but what a blessing He chose to do it this way, and look how much glory He received from it! Liam's MRI is scheduled for June 15th! We will be heading up to Breckenridge for a little family vacation thanks to a time share Danny's parents own and we will have some good time together before Liam's MRI. Thank you for praying so consistently for Liam. It means so much to our family.

Waiting.

We've been doing a lot of waiting lately and I'm sure you have too. We have waited for phone calls, appointments, results, for pokies to be done, for insurance approval etc. we wait for things everyday. Though, this generation is not very good at it. It's something we really struggle with, we want the answers now we don't see any reason to wait. We get anxious when the Internet doesn't work right away, mad when we are put on hold, and angry when the stop light is too long. I agree, waiting is very hard. Well waiting for all of Liam's appointments we've struggled with wondering why we have to wait so long. It always seems like it's because the doctor hasn't gotten to it yet or the lab hasn't finished it yet and we blame it on people and doctor's offices but it's not them. It's God. He is teaching us something. Something so valuable that it's also so hard to learn. Today, at church our pastor taught on the Semon on the Mount. About meekness. About waiting. He read Psalm 37. These verses stood out to me:

Psalm 37:4-11

4 Delight yourself also in the LORD, And He shall give you the desires of your heart.

5 Commit your way to the LORD, Trust also in Him, And He shall bring it to pass.

6 He shall bring forth your righteousness as the light, And your justice as the noonday.

7 Rest in the LORD, and wait patiently for Him; Do not fret because of him who prospers in his way, Because of the man who brings wicked schemes to pass.

8 Cease from anger, and forsake wrath; Do not fret—it only causes harm.

9 For evildoers shall be cut off; But those who wait on the LORD, They shall inherit the earth.

10 For yet a little while and the wicked shall be no more; Indeed, you will look carefully for his place, But it shall be no more.

11 But the meek shall inherit the earth, And shall delight themselves in the abundance of peace. Our future is Christ. We wait, and have hope and have joy in this world NOT because this world brings us those things but because in light of our future, waiting is worth it. Keep waiting! Hold on! Don't wait by sitting idly. He tells us to wait actively. Delight ourselves in the Lord, commit our ways to the Lord- actively waiting on Him. If we sit idly and wait we are bringing no glory to God.  Romans 8:18-25 18 For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. 19 For the earnest expectation of the creation eagerly waits for the revealing of the sons of God. 20 For the creation was subjected to futility, not willingly, but because of Him who subjected it in hope; 21 because the creation itself also will be delivered from the bondage of corruption into the glorious liberty of the children of God. 22 For we know that the whole creation groans and labors with birth pangs together until now. 23 Not only that, but we also who have the firstfruits of the Spirit, even we ourselves groan within ourselves, eagerly waiting for the adoption, the redemption of our body. 24 For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? 25 But if we hope for what we do not see, we eagerly wait for it with perseverance. This hope we have!!!  Some words from a John Piper sermon I listened to.  If you trust Jesus for your best life now, here on this earth, you don't have the kind of faith the Bible describes. Your best life is the eternal reality of fellowship with God in Heaven. Isaiah 40:31 31 But those who wait on the LORD Shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.  Wow! This verse is so full of God's strength and power. Look what waiting will produce! This life isn't easy, and it's not intended to be, Jesus promised trials and tribulations and those will bring us closer to God. They will glorify Him and make us more like Jesus. I have found that after learning more about what waiting is to God, I desire To live for Him here while I wait for the future. This waiting on Him is hard but  keep your eyes on the prize! Jesus! All I want is Him. While I am here I pray He draws me nearer to Him. I pray this waiting will cause us to need Him and trust Him more. It has and it's hard. Don't be anxious, fall into His arms and look to the future glory! Waiting is good when you know what's next.

The Test & Results

On Monday night we fed Liam late, around 9:30 since he had to fast after midnight. We expected that he would complain about being hungry and had prepared ourselves for that for the morning. Our appointment started at 8:30 at the Children's Hospital in Highlands Ranch. We left early and Liam asked for breakfast once and didn't care much when we told him he couldn't eat right now. On the 35 minute drive there he started to get nervous after we told him where we were going. We did tell him  before this what was going to happen so he wouldn't be caught off guard. I held his hand and when we arrived at the hospital we walked in and felt God's presence. The hospital is only a year old and it's a kids dream! There are wagons instead of wheelchairs, toys, beautiful kid friendly pictures, it's so colorful and EVERYONE that worked there greeted us warmly was happy and friendly and wanted to talk to Liam. Talk about easing fears. We got to the infusion lab and again were greeted by friendly faces. They confirmed we were all healthy and gave Liam and arm band with his info. The nurse took us into the first check in room and took Liam's vitals. She then brought us to the lab where everyone had their own room. He was her only morning patient and gave him the choice of which room he wanted- he was excited to pick!

The two nurses came in and brought all their IV tools. They took time to talk to Liam and he was his cute, sweet little self. They started looking at his arms to figure out which one would be good for the IV and explained to him what was happening. He sat in Danny's lap and started to get upset, we held him down and she got the IV in the first try. That was the worst part. It was over quickly though and he went back to playing.the nurse explained everything to us and then brough in the Clonidine for Liam to take. He drank it and she came back in 15 minutes later for his blood pressure (and every 15 minutes for his blood pressure for 2 hours) at 30 minutes after taking the medicine she came in and drew blood from the IV (blood was taken every 30 minutes for two hours). At this point he had fallen asleep and was out for the remainder of the two hours. 

The nurse then started the Arginine, which was pushed through his IV during a 30 minute period. He woke up during this time and was groggy but ok. He let the nurse do anything she needed and was so cooperative. Near the end of this part he started to get pale, unresponsive and just very "off". I started to get worried and called the nurse in who checked on Liam and said its very normal due to the medicine, the fasting, and the long day. When we were about 45 minutes from being done she said we could order him food and he would be able to eat after the next blood draw. We were so excited, we had been told it would be a 6ish hour test and we were only at the 4 hour mark!  As long as he would eat we would get to go home soon! He ate 2 cookies :), though he was still very out of it and she released us. 

 We were only there 4.5 hours. The nurses were so pleased that Liam was so easy to work with! Liam slept the whole way home and then for a few hours at home. He woke up pretty much back to his normal, spunky, active self! 

She had mentioned it would be about 48 hours before we would get the results.

I received a call today, around 3pm from Dr. Travers, Liam's endocrinologist. She explained that the normal kid has a level of at or above 10. The gray area is 7-10 and Liam's level was 2.76. A VERY clear indicator of Growth Hormone Deficiency.(GHD). She mentioned she also did a test for his cortisol level which was normal. She said the next step is an MRI. I asked why they do this and she explained that it is to rule out a tumor or deformity in his brain which could also be the cause of GHD( pituitary gland). It takes a lot of steps for insurance to approve it so it might be awhile but that since he's so young he would have it done at the Children's Hospitlal and be put under. As long as the MRI comes back normal we will proceed with the treatment. The treatment for Growth Hormone Deficiency is Growth Hormone shots that Danny or I would give every night. Which is a bit overwhelming but one step at a time.

The last two days have been a whirlwind and I don't know how long it's been since I prayed so much, read so much or thought so much about God. Having a child go through something like this is truly heart wrenching. You never want to see your baby in pain, traumatized or pleading with you not to let the nurse poke him. I wouldn't trade these two days for anything though. Both Danny and I have felt God's undeniable presence the whole time. Walking into the beautiful hospital, meeting the nurses, Liam being so cooperative, getting results quickly and getting such a clear answer plus many other things were 100% God's tender mercies and grace. The love we have received in the form of prayers, Facebook messages, texts, meals, goodies for Liam and calls has been so overwhelming and so humbling and shows us God's love. God has changed my heart. For people, for him, for Liam. I know Liam is a temporary gift to Danny and I. He belongs FULLY to God. He was formed by God and his life is His. I pray this whole experience will be used to glorify God, and help Danny, Liam, Oliver and I to be able to help other families going through things like this. We are ready for this journey! Praise to God alone!

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.