Fun Photos

I've decided that I just can't talk too much about Kyle's chest issue because it's entirely too depressing for me. To make it short, it's inoperable and we have to wait and see how it progresses until he turns 7. We are going to have a CT Scan done at the request of his Dr with Children's Hospital.

So, let's see some photos of how far Kyle has come.... First up, WALKING!!! It's been two months since he took his first step without the walker. It's still slow going, but he can usually take around 6-10steps now without having to "touchdown", and start again. He's also walking sideways and learning to maneuver uneven surfaces.












And here's a couple more just having fun being the big brother. I should note, he's GREAT with Ian and loves him very much.

Chest Wall Reconstruction for Pectus Carinatum

About 1.5 years ago, as a result of ricketts (brittle bone disease), Kyle was diagnosed with Pectus Carinatum (pigeon breast). Although the surface appearance is more mild, the ribs are sinking far in to his lung cavity. The risk, depending on the severity (to be determined), is great since it inhibits lung capacity. Kyle still has BPD (chronic lung disease), a condition resulting from prematurity and using high pressure vents on immature lung tissue. Because of this, his lungs are still under-developed for his age. In time they will heal, but not for a few more years at least. The added condition can inhibit this process.

As time has gone on, the chest wall malformation seems to be worsening (not self-correcting). Last week Kyle was referred to the Chief Surgeon with Children's Hospital in Chicago, who also specializes in Cardiothoracic Surgery and Chest Wall reconstruction. Our appointment is toward the end of June. If you know of anyone that has been through this, please let us know . We'd like to know what questions to ask, and what to expect should surgery be required anytime in the near future.

Thank you,
katra

First Steps

That's right... Kyle took his first steps today towards walking independently. He's been cruising for 1.5 years now, and using his walker consistently for 6mo. For the past 5-6 months or so, he's been practicing standing, and is still a little shaky - but standing. I guess he decided that he was ready to start trying to walk on his own, too. Fortunately for us, Karl was right here when it happened, so we both got to see it. Of course we cried, and cheered and gave him big kisses and high fives - I mean how could we not? It's one of the biggest accomplishments of his life. About an hour later, he worked up the courage to take another step. So we'll just start building on that, one step at a time.

This picture below taken a couple weeks ago. He's clapping because he's so proud of himself :) On the picture book below, you'll see a boy standing in the upper left corner. We've found a great collection of picture books with kids doing all sorts of activities, and his desire to imitate them, has helped us better teach Kyle how to do certain things. They also help in communicating, a trick we learned from his preschool. Where he can't say the word, he'll point to the object or picture to allow that to speak for him. However, his speech has come a long way. He knows and identifies his entire alphabet, counts to 20, counts down from 10, identifies multiple animals - the list goes on. School has made a major impact on his education. Being around other children his age, in a learning environment, is helping Kyle overcome so many obstacles. Did I mention that he even finger paints now? He was so threatened by anything that had an odor or made him think of food. Now he plays with real food, uses spoons to take food off of my plate and pretend eat or feed us directly. It's just incredible how well he's doing.




In other news... Kyle had his tonsils and adenoids removed, as well as having his 3rd set of ear tubes placed - YESTERDAY. We had to stay in the hospital last night for observation, but were released and home before noon. Yesterday was pretty rough, and he was on oxygen for about 12 hours. After that, the pain meds seemed to be working better. This morning he woke up at 5am, all smiles. The tonsils were causing an obstruction, and creating difficulty in swallowing and breathing. Because of the inability to swallow, he had turned in to a water faucet with all the drool. There's already been a big change in that area, with minimal drool today.

We're also fearing an upcoming drs appointment with Kyle. Over the years, due to nutrition shortfalls early on, Kyle has developed Pigeon Breast (pectus carinatum). With clothes on, it's not so obvious, but with his shirt off, you can see that his chest plate protrudes more outward, and unlike most PC cases, Kyle's ribs push deep in to his lung cavity - almost caving under. It's that particular problem that's creating a serious issue in Kyle's health as he grows. The problem has already been growing, but during his last growth spurt, Kyle's ribs did not extend downward like they should. Instead, they curled up further in to his lungs. As time continues on, this begins seriously limiting his lung capacity and growth. Since he already has BPD, he's at greater risk. His future will likely include a minimum of one major surgery, with additional surgeries not being ruled out. We meet with the Cardio Thoracic dr in June, and the Orthopedic surgeon next month.

Update on Ian...
The baby hasn't been doing so good. Serious tummy troubles - and I feel like I'm to blame. I had a botched root canal last friday (being finished this coming friday), and had to go on two meds that are not compatible with breastfeeding. I only had a few days of milk in the freezer, so I had to give him formula. We noticed a big change right away. Projectile to general spit up, extreme fussiness, decrease in bowel movements, and a rock hard tummy. Signs we're all too familiar with from what we went through with Kyle. I had to call the dr to see if I could discontinue the medicine. Since it was in my system for 48 hours, I could - but then I had to still wait 24 hours to breastfeed again. So this afternoon was the first time Ian has breastfed in nearly a week. He was so happy - but he's still having a hard time. Today, he's only had one nap, and just laid down for bed. I'm really hoping that the breastmilk will get his bowels moving again, and release some of the pressure and discomfort. Formula truly is horrible stuff.

On the upside... Ian has been playing under his playmat like a little pro. He whacks everything, grabs toys, and has begun bringing them to his mouth. It's so cute. He puts his little hand in the air, steadies it, then goes crazy smashing things as quickly as he can. He also loves talking to you - agoo, ahh, and then little laughs and smiles. He's also figured out how to click his tongue and has begun blowing bubbles. Ian also stares and smiles at Kyle, and of course Kyle just LOVES him! Here's a picture taken a week ago:

3 Years Ago Today

At 6:23PM, I delivered Kyle via emergency c-section, after days of struggling to keep him in. I don't remember his birth (I was put to sleep), my recovery was a complete nightmare, and he spent 6.5 months in the NICU before ever coming home. But I'd do it all over again, just to see his smiling face every morning. I'm so thankful to have him, and despite how difficult this week is for us every year - I know that I always have something special to celebrate at the end of it. And that's that he survived all the odds, most likely with the strength of his little angel, Konner, that watches over him, and he's still with us today.

Please light a candle today to remember Konner, and say a prayer thanking God giving us Kyle, as well as this blessing still growing inside of me.

Christmas is Coming!

Karl and Kyle set up the Christmas Tree today. Karl actually put it on our bedroom so that I could enjoy it with them. Kyle got to hang several little ornaments along the bottom. All the while saying, Wow, Oooh, Yeah, and so on. This is the first year that he's really taken an interest in Christmas or even the tree. So I'm thinking this is going to be a great year for him. He's already got a jump start by learning Jingle Bells, so sweet.

Kyle also got to tour his new school this past week. Karl met with the Director and District Nurse. Everything went great, and Kyle played like a big boy during the meeting. They go back for evaluations with the PT, OT & ST groups on December 6th. It seems so real, my little boy is going to start school!

As a little school gift, mommy has ordered him a very special something, to be given on his birthday. Using most of it will be limited to play indoors until the spring comes, but I know it will be special none the less. We bought him the complete Kidorable Frog Collection. Boots, Hat, Umbrella, Raincoat, Backpack & t-shirt. He watches this little show called Jack's Big Music Show on Noggin, it's all about music and learning. Anyway, his favorite singer, Laurie Berkner, does a song called Boots. During the song, they feature Frog Rain Boots. Kyle LOVES it. He yells, Hop, Hop, and will being hoping or dancing around. He also stomps and acts like he's splashing. It's just too cute for words. Well, I know he wants boots - so I was thrilled to find the exact ones for him.

To discuss his health for a moment. It seems he has picked up a stomach virus somehow. Karl had to take him to the Pedi on Wednesday, and if things haven't cleared up by Monday, we'll have to schedule him in again. However, he does seem to be doing better than the other day. He's stopped throwing up, but we're still working through the loose stool issues - or should I say poor daddy is. :( I have to be a little careful around him, to avoid getting sick myself.

This picture is a little older, but it's from the first snow.


And one more, just because.
Pregnancy News...
Well, you're going to have to get this info on another site. I wanted to keep this blog dedicated to Kyle. So, we've set up a blog for baby. You can access it at the following link:

http://knoernschild.aboutmybaby.com/

We've loaded in some pictures, and added another update there. We have many more pictures to scan, convert and upload, but I can only ask so much of Karl at a time. He is truly the best man in the world. I don't know how he's managed to do as much as he has thus far, but I can't thank him enough for caring for both Kyle and I.

More news from the homefront

Next week is Kyle's big week. He gets to meet with the Early Intervention School Director and get to tour his new classroom. Karl will be meeting the director and nurse to go over Kyle's general history, basic needs, etc. There's another meeting scheduled in early December for evaluation and placement purposes.

Kyle seems to be quickly getting around his limitations. The other night, he managed to pull out several dresser drawers, positioning them like stairs, and begin scaling them. Karl pulled him away before he got up to the second set, LOL. He's also on a talking streak lately. Learning several new words and sound combinations every day. Books still seem to be among his favorite toys, particularly his Big Baby Book.

Today he did the CUTEST thing. I was laying in bed watching the end of Bringing Home Baby, and the mom and dad were giving their baby a kiss. Kyle was next to me, and crawled over and gave me a great big kiss - I just wanted to cry, it was so sweet :)

One of the moms from my Mothers & More group dropped off dinner tonight, and has offered to pick Kyle up on occassion for playgroup in the neighborhood. In addition, one of my neighbors has also offered to pick him up from time to time, to come down and play at their house. I was so thankful for their offers. I know Kyle will really enjoy getting out to play with other kids. I feel horrible that he isn't able to do much, in the way of out of home activities or getting to see other kids. Fortunately, Karl is working from home full-time now, and his mom has come up a couple times - spending several days to help out. At least I know Kyle is getting enough quality playtime and attention here in the home.

Pregnancy News
Last Friday, due to an overwhelming number of contractions, the Peri put me on Indomathicin to help break through the contractions and give me a little relief. They also ordered up contraction monitoring. I did have some relief through the weekend, but the contractions started up strong again yesterday. Today I had 9 contractions in 2 hours, then I've had about 3/hour since. Fortunately my cervix is holding strong, but it's enough to cause concern. At today's appointment, the Peri decided to put me on a terbutaline pump. My home nurse comes tomorrow to give me my 17P shot, and I think she'll have the pump with her. If not, that will be set up on Thursday. I'll continue with the 17P shots until I reach 36 weeks, regardless of the use of terbutaline.

We opted for the terbutaline pump this time, because the pills proved to be inconsistent, as they are only as effective as your system processes it. In my case, they were wearing off before it was time for the next pill. In addition, I had alot of chest pain from the spikes as a new dose was delivered every 4 hours. With the Pump, I'll instead have a low, continuous stream of medicine pumped in via needle, under the surface of the skin. The continuous flow minimizes some of the risk/side effects often felt in using the pills. It's also a consistent dose, but if I do have breakthrough contractions, I'll be able to press a button so that a bolus dose is delivered immediately. Pump doses can also be monitored and adjusted easily vs. pill form that's dependent on the pre-manufactured dose. Procardia was another option, but since I've been on bedrest, my blood pressure has been pretty low (90s & low 100s over high 60s/low 70s). The doctor expressed a concern about having a negative response/increased risk, since the drug is intended for treating hypertension (high blood pressure).

In general pregnancy/OB related news... I've lost a couple more pounds this month. So I'm back to being 10lbs under my prepregnancy weight (I had gained back 2.5 of that in the month prior, now negated from the loss). It doesn't really seem to matter what I do, I can't gain anything substantial. Fortunately, it doesn't seem to be affecting the baby at all. They're doing regular growth scans to ensure that baby progresses as they wish. Right now he's measuring nearly a week ahead, so that's reassuring. However, I'm measuring 32-33 weeks at only 23 weeks along. That's a little frightening. Still no explanation for the abnormal growth, they've just chalked it up to an anomaly. I go for my Gestational Diabetes test in two weeks. The dr doesn't see any reason why I won't pass. Which is reassuring, because I don't need any more bad news.

In conclusion, I will continue to see my OB every two weeks, and my Peri twice/week. Hopefully the Peri will change to one time per week soon, because admittedly, all these appointments take alot out of me. But I know it won't change until they're comfortable knowing that I'm not at risk for cervical change, and not until my contractions are under control.

Halloween, Progress & Pregnancy Woes

Kyle was so interested in Halloween this year. As every treater came to the door, he had to check them out with a big grin on his face. He was even trying to reopen the door after they left (scary, since he can unlock the door too now). Most of the night, he sat perched near the front door, staring out the sidelights, or in the front dining room, looking out the window. He just had to be part of the action. He also got to go down part of the block to hand out cards and stickers to his little friends. Here he is in a little overall outfit I made for him, in "Ugly Doll" fashion.

Progress
Kyle is making some great strides in development again this week. He's been trying to let go of things and stand on his own, but still gets a little scared. Well last night, he kept going from sitting to almost standing upright, over and over again. He was so proud of himself, as were we. It was hard to get pictures of him doing that on the camera, so I don't have any to share :(

He's also continuing to work on sounds and words. The latest addition is Box, quite a complex word for him, but he really loves "K"-like sounds, and X is a good substitute for K. And of course hearing him sing Old MacDonald is just the cutest thing ever. E, I, E, I, O - Duck, Quack Quack. He's just so cute!!!

Kyle is getting better at following commands, particularly cleaning up, and bringing items to mommy. He used to pick his toys up constantly, but got out of the habit, so it's nice to see that returning. He also helped daddy put all of his clean clothes in the basket. In addition, he's getting more coordinated in helping to put his clothes on and take them off. He can't put his socks on, but he will set them on his feet. And he loves doing the velcro on his shoes. His other big responsibility is helping with his medicine. He's such a big boy now that when we hook up the syringe to his feeding tube, he insists on pushing it down, LOL. He also knows how his tubing connects to his feeding pump, but he isn't strong/coordinated enough to open the feeding cap, and insert the tube properly, so we still help. I'm so proud of him!

Pregnancy Woes
Well, at my Perinatologist appointment on Friday, we found out that my cervix had shrunk from 5cm to 3.7cm in 3 weeks. 3.7 is still within the range of normal, but the drastic change was a bit of a concern. In addition, I've been averaging around 20 contractions per day, plus general BH irritation contractions. Activity picked up on Saturday night, despite being on modified bedrest. The baby dropped low and was kicking my cervix, causing more contractions than normal. They were timing around 15min apart, so we called L&D and off we went. Once there, they manually checked my cervix, which hadn't noticeably changed (thank goodness). So they put me on fluids and gave me an ambien to help me rest. The contractions at first were sporadic but close, some 5min apart, some 15, some a little more. But given that it was more than just irritation (Braxton Hicks) contractions, my OB kept me overnight for observation. They released me the Sunday morning on complete bed rest for the duration of the pregnancy, or until they decide otherwise.

So, I'm 22 weeks, and on complete bed rest - which isn't easy to accept having a toddler, but we'll do what we must. My Mother in law has offered to come up and stay with us for a little bit, and should be arriving today. After she's gone, we're going to work with friends/neighbors to come in on Tuesdays & Thursdays to help out. Karl works from home the other days, so it's not going to be as terrible as it could be. In addition, the wonderful moms from my Mothers & More group have offered to bring in dinner one night a week. The support is just overwhelming, and I'm so thankful to have friends to help, since I don't have family in the immediate area.

My only major concern, is that Kyle starts EI Preschool in January (4, 1/2 days/week) I just want to make sure he's getting the care/attention he needs in that area. And unless we can get the school director and nurse to visit us here, Karl will have to do all of those planning meetings, plus the evaluations with the therapists without me. I'm confident that he can, it's just that this has been my hands on area, so I'm nervous.