We heard from the nurse on Monday afternoon. She said, "we got the lab results and everything is normal." "really? Did they look at all the chromosomes?" I asked. "yes, everything is normal."
I was shocked and somewhat excited to hear. Yet, it won't change what we're doing with him day to day to help him strengthen his muscles, eat better and be mentally and physically healthy.
Your prayers are still GREATLY appreciated. Who knows, the normal results maybe an answer to all our prayers! One thing I do know, the progress he has made in the last few weeks are, for sure, an answer to our prayers. God hears our pleas and has embraced Thomas close to his loving and healing heart.
When I told Robbie, he didn't share much in my slight excitement. It only opened the door to many more questions and the questions we did have are now left unanswered. I felt all this to be true too but at the same time, having his genes looked at and said to be "normal" ruled out many, many possible issues. The results definitely give us hope but the question still does remain in the back of our minds, "Are the results correct?"
We have an appointment scheduled with a geneticist in Dallas at the beginning of June. We plan to keep the appointment and I plan to bring the copy of the lab report with me. (I'll get that on Monday at Thomas' 4 month well visit.) I want to see what the geneticist says and possibly get more knowledge on how we can continue to help Thomas and more knowledge on what could be going on, whether it's genetic or not.
I met with the OT on Thursday. She was also very surprised at the results and said, "I've had more kids come back with results that say "normal" when the child fits the criteria of having a genetic syndrome." I don't know what that means for us but it's interesting to know.
The OT was very encouraged when she saw Thomas. She felt he had made significant progress from the first time she saw him. That was very wonderful to hear! We continued to go over things we can do here at home to help strengthen his upper body muscles. I will meet with the OT every other week and an Early Childhood Intervention Specialist every other week. They come to our home which I think is great! Because Thomas is always different when I take him out places. I like that they get to see him here where he's himself!
Let me tell you more about Thomas!!
He has brought such delight to our hearts!! I have some great videos of him that I can't even share with you because I took them on my new phone and I can't figure out how to put them on the computer or open them once on the computer! Grr! At least we've gotten some good smiley pictures of him though!!
I think this picture is of when he first really smiled at us!! Robbie was tickling him and he responded joyfully! The kids LOVED it!!
Thomas has been opening his hands more. This picture is a good example! Could that be a wave?!! I think so! He's saying, "Hello wonderful family and friends!! Thank you for your prayers for me!"
His eyes have opened up more and he has been making eye contact more. His little eye muscles are getting stronger too. He still goes cross-eyed from time to time but not as frequently. He loves when the kids talk to him and get right in his face. I always want to tell them to not get so close but every time I see the big smile on his face and his eyes staring right into theirs, I hold my tongue!!
He was getting tired or sitting up and I think sometimes he wonders why we make him work so hard! ....Because it's good for you Thomas!!
The more smiles, the happier we all feel!
In the beginning, he slept and slept and slept. There wasn't a day that passed that I felt like we were going to lose him and I would pray and pray to God that he would give us another day with him. He wouldn't eat and didn't seem to care if he did eat. If he wasn't sleeping it was only because we were trying to force him to eat and keep him from falling back asleep.
Praise God for all the changes and the progress that he's made!! He is still our little peanut but he has grown out of the newborn clothes and has actually grown into some 3-6 month sleepers!! For the length more than the width but still, he's growing!!
We can't wait to see what he weighs, his length and how much his little cranium has grown! His 4 month well visit is this Monday.
Now at 4 months, he is making his way into a good feed-wake-sleep schedule. Around 3 months he got a touch of the stomach flu and ever since has been eating like a champ. He went from struggling to get down 15 oz in 24 hours to eating between 18-21 in 24 hours! That's a pretty good jump for a teeny-tiny kid! Not only are the ounces he's getting good but the way he eats. We're not having to wake him and force it in him. He wakes up on his own and actually will pull the bottle to his mouth sometimes. He sees it and gets excited. He has a stronger suck than before. The OT said he now has rhythm to his sucking. Which apparently is a good thing! He also plays with his hands and puts them in his mouth more often. (praying this all continues!!)
He has started responding to us much more with his smiles and coos. It is amazing and adorable! He loves his brothers and sisters so much and looks around for them when they start talking to him!! I see him smiling at them more and more each day.
After he eats, I try and sit with him for a bit to do his exercises and talk to him. He will fix his eyes on me, smile and start talking, "cooing," "gooing" and "oooing." When he coo's it is the cutest, sweetest sound! His cry still doesn't sound normal but it has certainly gotten stronger and louder!
He's become much more active. Waving his arms and kicking his legs. I place him on his tummy help him get his head up high. I want him to stay there and practice lifting his head but he immediately sticks his little behind up in the air and turns himself over. This has brought about a new game of "mommy puts me on my tummy and I roll over." Repeat that 20 times. It's like the song that never ends! :)
He moves all around in the pack-n-play and when it's safe he'll move all over the rug on the floor. He's been reaching for toys and this morning I caught him reaching for Anthony's big blue monster truck. Anthony would have been so happy to see Thomas playing with it.
Things we're working on are strengthening his eye muscles so he's not so cross-eyed. Strengthening his neck muscles. He's doing better and will hold his head up for longer periods at a time but he's still doesn't have full control of his little head. For the time being, Thomas is our little bobble-head.
I also want him to hold his head up while on his tummy better and more often. We'll keep working on it! I need to try and get a picture of him doing this!!
He's just starting to bare weight on his legs, for short periods. That is exciting because he would have never done that before, even if it is only 5 seconds at a time!
I think that is all to report at this time. Thomas is waking up from his nap and urgently calling me to pick him up and feed him. I'm so thankful for this urgency!!
My dear Thomas, I'm so thankful for you!!! You have brought so much joy and love in our family in just the short time we've known you!
Thank you again for all your support and prayers! As parents we feel the graces from your prayers and seeing Thomas change and grow, as slow as it seems, feels miraculous!
Please continue your prayers as we continue on this journey with Thomas.
Thank you, thank you!!
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Thomas just ate 3.5 oz without stopping or spilling a single drop! It took him about 20 minutes and while he was eating he was holding my hand, staring at me and smiling with the bottle in his mouth! How wonderful it is to see the glory of God through the eyes and smiles of our children. At that moment, God's glory was shown through Thomas. Thank you God for that moment.
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