Saturday, August 30, 2008
Kyle doesn't try to pull his oxygen off much anymore. He just happens to prefer it in his mouth. So anytime he can he will pull it out of his nose and put it in his mouth just under his top lip. Then if he is awake he likes to blow bubbles! This time he just went ahead with his nap! too cute!
Friday, August 29, 2008
Before kyle even came home from the NICU I felt like doctors would be our main resource in helping kyle develop and grow - reach his full potential physically and cognitively. So the day we received Kyle’s MRI results I began looking for the best neurologist I could find. I didn’t care if we had to fly to china once a month – I was ready. Long story short… Kyle has now been to 3 neurologists – one of which is known to be one of the leading pediatric neurologists specializing in PVL. He was brilliant - so knowledgeable in his field. I really could go on for days about all I learned about Kyle and his brain development, his specific injuries and on and on…. His information was far more in depth and relative to Kyle’s development than I had heard before. His thoughts on kyle:
He sees NO signs of cerebral palsy!
Kyle is on track developmentally for a 6 month old (his corrected age to the day of our appointment)!
He was shocked and impressed that Kyle could sit up!
He was thrilled by his social skills!
He was shocked and impressed by his eating and NO Meds!
His concerns were in the area of coordination and some involuntary movements of his hands and feet. He felt like this is something called Chorea. This has just recently been discovered in preemies – mostly preemies with at least a grade one or two bleed. If you have ever been here when a neurologist or “the big doctor” on your son’s case says they have a concern – it is like your whole world stops spinning, all the good comments leave your mind, your faces gets hot and your hands cold… - and then he tells me that they think it can be controlled with meds, they think the children may can outgrow it and he would not medicate Kyle for it right now –
He said statistically Kyle is at super high risk for fine motor problems and also learning disabilities. Then he said that he is only saying that b/c statistics show this but he is looking at kyle and he looks like a “normally developing” 6 month old and he has blown all the statistics so far!
I was ecstatic to hear that! He did encourage us to keep working at all the therapies we could get our hands on. He agreed they make all the difference!
Our last physical therapy was a couple of days before that appt. Sarah was also thrilled at how kyle was doing. He really is getting big! He is accomplishing all that she puts in front of him! Her concerns are more in the areas of planning and organizing. Meaning wanting to play with a toy and organizing himself to figure it out. This also plays into fine motor skills. So we are working hard in this area.
We started speech therapy this week – that went well – she does not feel like kyle has serious oral aversions or even texture problems. She feels like kyle’s gagging and vomiting may be related to organization as well. Some foods do not give him time to organize “a swallow”. This is instantaneous for most people – but for kyle it maybe due to brain immaturity or injury. We are seeing this in other areas (physical and cognitive) for kyle, even in some areas that we have conquered so this leads me to believe that it may be immaturity. Either way we expect this to improve as we teach through therapy and with maturity!
We also had Kyle’s Dietitian appointment today. More good news from her. She loves how kyle is looking and she would even like to take him off preemie formula! What a big boy. He is in the 20th percentile for height and weight FOR HIS REGULAR AGE! Not even corrected! She also had some great ideas to help kyle’s desire to eat and ability to move forward in eating! I am excited to begin her thoughts and see how he responds!
Kyle at the end of summer:
can roll over, sit up, grab objects (and his food and spoon), bring them to his mouth,
bring his hands together to grab a toy, chew on his feet, has 2 teeth, is growing lots of hair, he smiles, laughs, squeals, sings, talks to people ( LOVES PEOPLE!), grabs his bottle to hold it, responds to the signs – all finished, up (to be picked up), more. LOVES his big brother jadon, is not sure what to think of big brother jack, loves his mommy, smiles any time he sees his dad – and I mean any time! He sleeps 12 hours a night, takes 2 two hour naps, eats breakfast lunch dinner and bedtime bottle. Too busy for a bottle doesn’t like it unless he is sleepy, loves baby food and to teeth on fresh fruit and veggies, LOVES MUSIC – we turn on the radio and dance and he LAUGHES!
Kyle is working on:
Drinking from a straw and cup, eating food with his hands, weight bearing on his knees, picking up objects, standing, rolling to the right, sign language, learning to recognize his name, moving his eating base to his real age.
Kyle – you are a joy. A daily, miraculous joy. You are such a hard worker and have the sweetest disposition. I am so proud of you and all you are teaching our family. You have changed me for the better – you have added such value, joy, fun and love to our family. I love you.
Monday, August 25, 2008
Jadon now is about to be 6 in october. He starts kindergarten in 2 weeks - he is so smart, has an amazing imagination - just amazing. Not a day goes by that a pirate ship doesn't overtake our home and he resucues us with swords and kung fu (as he puts it). He is bossy as he can be too - but has this amazing magnetic personality! He has 2 rock bands- one with his cousin emily and one with the neighborhood kids. Had his first outdoor concert the other day on our neghbors porch! Jack is 2 1/2 and is absolutely hysterical. Every word is adorable, every action is dangerous, every thoughtful moment is precious. He LOVES his big brother! Does everything that jadon does - everything! and then there is kyle! more of a miracle everyday! This little 23 weeker is blowing me out of the water - and not just me either! He is surpassing the expectations of his therapists, doctors, and nurses every visit it seems like! I will update that really soon!
As for me - I am constantly learning still and constantly growing. I have spent so much time lately trying to take back my life and my family! So much had gotten so out of control - fear, sorrow, fear, mistrust, anger, lack of sleep, did I mention fear? But really - I found myself a couple of weeks ago in a constant spiritual battle where each day I woke up choosing sorrow. I wanted to be angry at what happened to kyle and worse what happened to my friends and their families. If I was angry or stayed in my grieving then somehow maybe just maybe these little lives and these preciouse mom's would be justifited. the only thing in my mind that this began to justify though is the anger. the anger over all of it. then all of the sudden i began to find comfort in the sorrow of strangers. the world wide web is a crazy place. a crazy and big place! I found myself desperately grieving in the middle of the night over mothers and children that i did not even know. This comfort progressed to the (what should have been) past sorrow of Kyle's birth. The temptation was to live in fear for kyle's future - the way we did when he was in the hospital. to live in sorrow over what I feared we had lost - a lack of hope and choosing to focus on the struggles of everyday INSTEAD OF TRUTH - which is the amazing hope God has given us in scripture, in the visions he showed me of our boys playing in the back yard together, and now the amazing reports from therapy and even doctors.
For anyone that knows me - you would know this is not me. That is how I knew it was a battle. It was taunting from the enemy to abandone hope. to abandone selfless faith. to abandone love and joy.
This past month I have steered clear of the web. even my own. I found myself reading women's blogs that had been through tragedy but on thier blogs seemed to LOVE the lord and accept his truth and hope. I commented and tried to reach several of them to ask - "how did you get here - how did you find your way out of the yuck. these women had lived tragedy like I have never known and they made it back to God - made it back to LOVING him." I never heard from any of them. well - I did one just to let me know she reads every blog comment but then i never heard from her past that regarding my hopes to learn how she reached this faith she portrayed online. I guess I am just saying I realized that none of these people could help me. the are words on a page to me - I dont' know them - I have not met them - I have never even talked to them.
I got honest. took it all to God. asked for support from my husband. found a friend to pray with. (took some good advice and started sleeping at night!) and most of all - woke up each morning and thought on the hope that I have for the future. chose to be thankful for the way God is healing kyle and awakening my family. chose joy in my boys and in my daily ... whatever I am doing. It is helping. not by any means a fix all - but a wonderful wonderful start.
NOW - what am i doing - on to kyle - I'm goign to upload some pics and video!
Friday, August 8, 2008
Wednesday, August 6, 2008
- John and Kelly
- This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.