I think I have said this before but it was probably more in sadness than in joy; a year ago, if I did have the courage to write it before it was this, "there's not a day that goes by when I don't pray for just one more day with our sweet T." "Please God, don't take him away yet, give us one more day."
I held him many, many nights with tears streaming down my face, embracing him, cherishing the sweet smell of our little babe, feeling his heart beat against my chest, hearing him breath and preparing myself for the worst and praying for strength. A good friend told me early on, "it says in the bible, our days are already numbered. God has known from the beginning how long we'll be on this earth." I found strength in our creator and strength in cherishing His gift. I didn't know how much time we had with him.... BUT this is not supposed to be a blog post about the hardships or the fears or the sorrows! This post comes a year later, full of joys and blessings!! Thomas celebrated his first birthday on November 26th! I woke up that morning not realizing the joy I'd feel the whole day through and continue to still! Literally, I danced with him in the kitchen! That's not that uncommon, I like dancing in the kitchen with all my kids (and my hubby too!) but this time was different! I felt like we were floating as joy engulfed my heart and soul! I never thought we'd actually make it this far!! I prayed and prayed we'd get to celebrate his first birthday with him and here we are now! Look how far you've come sweet Thomas! oh my goodness, as I write I feel like I want to jump up and hug everyone in site (but there's no one in site so I'll sit here and continue to write and hopefully you'll understand the complete excitement and happiness that is flowing through my heart and ready to shine and light up the sky.
Thomas' first year journey is, in my opinion, an incredible one. He has gone from a sweet, tiny, almost lifeless but squirmy, having a hard time breathing little babe who wasn't growing, eating or waking up. Now is a delightful, determined, happy, sweet, strong, interactive little boy who enjoys life with his family! Amazing!!! What a gift! He truly has improved leaps and bounds! He is a different boy and the progress he has made is extremely encouraging!
So let me tell you what Thomas is doing now! Actually, right at this moment, Robbie is stopping him from grabbing all the ornaments off the tree. This is wonderful! He's turned into one curious little boy with big determination!
At one year old he now has 3 1/2 teeth! One is still trying to make a debut! It was funny to watch his teeth come in, first on the left bottom, then the left top, then the right bottom and now the right top! I assure you, Thomas is unique in every way! He sees a physical therapist weekly and an early intervention specialist weekly to help with motor development and give mom, dad and siblings tips to help Thomas learn to move his little body! He started sitting up on his own around 10 1/2 months. He loved when he was able to do that! This opened up a whole new world for him! He started rolling around 6 months and has done a little "inch worm" to move to toys since about 10 months. One of his favorite moves, he learned around 9-10 months, is pushing with his legs when on his back, he moves the fastest this way. He also loves to plank. It's very exciting to watch him get stronger and reach little goals and milestones! Milestones we didn't know he'd ever make! He has good muscle tone but is weak in his neck and core, we work daily with him on crawling and going from crawling to sitting. He started to transition into sitting and gets stuck but he keeps trying and usually lets out a big moan like a body building does when lifting weights. It's pretty awesome! Like I said, he's a determined little boy and we're very thankful for that! He's just starting to try more often to crawl in the normal pattern and not inch worm style. He moves his arms which is awesome because it shows he's gaining more strength! Right now he will still drop his legs or move both his knees at the same time instead of right/left. So we help him with that and I know pretty soon he'll get it!
One thing I've been so grateful for is that he has shown he can learn! He reacts and responds and mimics more and more! It's so fun. He seems more and more "with it" for lack of a better word and less "out of it." I think a lot of it has to do with his eyesight getting better. Because of his small optic nerves and nystagmus (shaking of the eye) he couldn't see very well. We know that he is seeing better and farther now. This is wonderful!
*Medical update: We saw his Eye doctor earlier in the month and he said that he is seeing with both eyes! The thing is is that he only focus' with one eye at a time, he just switches which one he looks with! The eye that he's not focusing with will turn in because it's not being used. The Doc proposed Strabismus surgery to help his muscles work together and become stronger. After months of weighing the pros and cons of this, we think we're going to go ahead with it in Feb/Mar. Before the surgery though, the doctor will evaluate him again to see if he's improved at all. I'm thankful for that!
Thomas has started to do this little shaking of his head at times, which worried us at first but the therapist thought that it was him trying to focus now that he's seeing farther. With his eye shaking he has to try and make it focus and this might be his way of doing that! He has done it less often now, maybe it was just a phase. Speaking of shaking, we did have an EEG done to check if he had been having seizures. We're thankful for negative results! He showed no signs of seizure activity! And his MRI had come back clear of any brain abnormalities! Praise God!
Another thing Thomas had been doing is banging his head. He would scoot himself to a wall or the tv case and bang his little head. Let me tell you how much this disturbed me and I was certain this was a sign of autism! His therapist assured me otherwise and is sure it's more a sensory issue. He has since stopped his "head banging" and has moved on to rubbing. He loves the feel of anything rubbing on his head. I think one big joy of his through out the day is when you put on or take off his shirt. He smiles and will giggle. He rubs his toys on his head too. It almost seems like his way of exploring things. He doesn't explore textures with his mouth as often as he does with his whole head. He also loves when you go down the stairs fast with him and he bounces, we smiles big and giggles. He loves being tossed up in the air just like the other kids and seems to ask for more!
Thomas shows us his preferences, his likes and dislikes. When I put him down for his nap, he fusses! I walk up to his crib, he sees where we are and knows what goes on here! What a blessing! I told Rob, "I've never been so happy for a child to fight me during nap time!" He plays with his toys, purposefully drops them to watch them fall and then waits for me to pick it up for him! One of his favorite things to do is stand up! He loves when you help him into standing! He always screams with excitement. He laughs at his siblings and cries when then stop playing with him, which usually makes them go back to him and play some more! Smart boy!
He has a favorite toy that he can move with his little fingers and arms, he usually with laugh and "talk" while rolling around with it and it is for sure the best toy to get him to crawl for! He also loves to look at himself in the mirror and will giggle! He's making more and more sounds now and his breathing is less noisy! He blows raspberries and is moving his tongue more. Before he didn't have any lateral movement of his tongue and now we see more of it. In general, we see more movement of his tongue. He loves eating from a spoon and is eating all kinds of foods. His favorite is eggs and sweet potatoes. I've been pureeing my own food this time around and am happy to say he likes it! His food is thicker but he doesn't eat chunks yet or crackers or Cheerios. He's bringing toys to his mouth at times but doesn't like food like crackers or Cheerios. He will usually gag on these. He'll gag on anything but the new born bottle we feed him milk with. I think it's because of his "small mouth" or "high pallet." He enjoys eating from a spoon much more than he ever like the bottle! I'm glad that he's eating better and has a good diet! Probably the healthiest in our family! I give him probiotics to boost him immune system and he's on Zyrtec for his allergies. This has helped him tremendously! He eats ground flax seed every day which helped his bowels! It's also packed with good omega's!
*Medical Update: His fingers are opening up more and more and we are encouraged that they'll continue to get better with stretching! He had an x-ray done and his bone are perfectly fine so it's either in his tendons or his skin. For now we're going to continue stretching and letting him work on opening his hands! So far, so good! The latest fun is that when we clap his hands for him now, he actually opens them up so he can make a clapping sound! That's success in my book!
Among all the tests and good results we've gotten, one interesting one was the genetics. He is missing part of his chromosome 3. We don't know for sure if it's in the dominate gene, the recessive gene or both. The geneticist said that most likely it would be one or the other and maybe even the recessive in Thomas' case because he doesn't have any of the big concerns seen in the few other cases out there. There was only one syndrome she thought Thomas might fit into, "FoxP," and it was due to developmental delay and severe speech impairment. We expect him to have speech delay because of his tongue issues and really the lack of sounds/babbling that he makes. Also, possible, decreased hearing. The Chromosome deletion is 3P14.1-3P13. The Dr. explained that it's a smaller deletion but that it's hard to define small in T's case because "we" meaning the genetic people out there, still don't completely know the intricacies of each little part of a gene. It's really been interesting talk with her and learning more about the "gene world," how much they know, how much is still theory and how much more, they realize, there is to learn! In Thomas' case, we're excited because there's much more to learn than what we already know. So Thomas really does get to be our teacher and his development is open to so many possibilities! His options are endless! We're happy to be on the road of discovery and not be told to have low expectations. Does that make sense? We'll see the geneticist one more time here before we move. Mainly we want to see her again so she can see Thomas and we can have record of him and his (God-willing) developments or (hopefully not) the lack of developments and possibly be able to help out others in the future who want more knowledge if they're put in the same position as us.
Thomas will be monitored every 6 months by a cardiologist because of his ASD and the crazy way his little heart was put together! I'm pretty sure I haven't written about this yet! His little heart is doing a fine job, the right atrium just has to work a little harder to because it is getting blue (lack of oxygen) blood and red (with oxygen) blood! One of his pulmonary arteries isn't hooked up to the left side of the heart like it's supposed to be but rather is hooked up to the large vein that dumps all the blue blood into the heart. So his right atrium is having to work extra heard because it gets extra blood to work with. This is good nursing terminology isn't it?! Only one pulmonary artery is giving the heart red blood to pump out into the body. Thankfully he does fine with it but it'll be good to monitor to make sure the right side doesn't become enlarged.
Lastly, he sees a CranioSacral therapist in Dallas. I do have to say that I have loved all of these appointments with her and I think that they really have worked wonders with him. I honestly can't say he would be doing as well as he is if we hadn't been able to see her as soon and as often as we have! But as Rob says we will never know if it really did help him or if he'd be this way if we didn't. I guess, I'm glad to not have to take the gamble but am able to see him progressing and doing well and we'll keep seeing the CS therapist. Our PT said, recently, to me that another one of her babes reminds her of Thomas (or how he used to be). They're the same ages and both boys but this other little boy is farther behind. We both thought maybe the CS therapy had some role in his development since that was one difference in their care. God only knows!
To wrap up this long written update and Birthday post for all who care to read and for me personally to have written down so I don't ever forget, I want to say how Thankful I am for Thomas and had I known this before he was born, I wouldn't have changed a thing and the ups and downs of this year hasn't made me hesitate when thinking about giving Thomas and our other kids another sibling. God is in control! And I'm thankful, even though Dr's have said that Rob and I should have our blood tested for chromosome deletions, no one has "suggested" that we "hold off" on having kids until we're tested. Lucky for them too, because they would have had a polite earful from the two of us on the gift and dignity of life!
Anyway, this opens a whole new box which I didn't plan to go! My point is that we are so thankful for Thomas and all our kids and God's divine plan for our family. The road isn't always easy but God's graces are immense and children whether labeled normal or not are beautiful, unique and cherished! I'm thankful for the opportunity to have my heart opened wider than I could have ever imagined and to be able to love in a way I didn't know I could. To have your heart transformed by the grace of God is something that words can not even describe. I'm just grateful that God chose our family to under-go this transformation, even though many times I questioned him and complained!!
Thomas, you are loved! Grace, you are loved! Anthony, you are loved! Bella, you are loved! Robbie, love of my life, I'm thankful to grow closer to you each day and have you by my side through life's journey. You, your faith and your love keep me going!
Praise God (a gazillion times over)!!
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