A Brand New Year

So sorry for the delay in posting any new messages. The Holidays came and went, Valentines Day has now passed, its crazy how quickly time flies and even more crazy how much Chase has changed during this time! Where to begin? Well, for one. Chase has begun to walk! We got a glimpse of it, on fact, on Christmas day! He spent the next few weeks trying to figure it out. He's funny, you can see his expression change too. He gets all serious and looks very focused and motivated at the same time. He had the same look when he first realized how fun it was, and how much of a challenge it was, to climb up and down the stairs! So....the past few weeks he's really perfected it and is walking all around the house. He still likes to crawl, so he goes back and forth between the two. He also is a monster because he really enjoys getting up on the stove handle bars and hangs backwards. You can tell where I'm going with this!

Speaking of being a monster....his new thing is making "sassy" noises with his lips (much like that of a horse expressing himself). He spits out food and he does it sometimes to be spiteful (or so it seems)! We're trying timeouts now to try and refocus him. We just read that saying "no" before actually age 3 actually hinders development. Anyone disagree? I'll bet there are a few out there, its harder than it sounds, especially during times like these.....

What else? Chase continues to be a challenge with eating. His primary diet is Pediasure (Vanilla and Strawberry are his favs) and whatever else he will take that day. He eats baby food really well on occasion and seems to enjoy foods his daddy likes such as: meatballs, cheese, bologna, sausage, and all that heart friendly food! We just keep trying new things each week and I must say that Katie has been just wonderful as the primary feeder. Some days my patience would run thin, but I give her all the credit in the world for sticking with it and trying new ways to feed him!


We have a few follow-up appointments with Chase's ENT surgeon, Dr. Wei and with his current pediatrician, Dr Gratney next week, so we are hopeful all is well in their eyes. Chase has been doing great without the trach and his breathing through his nose appears to have improved too. He still has what looks like a belly button where the trach hole was, so we may have to have a cosmetic surgery to pretty that up at one point, we'll know more about that later......Hearing aids are still being worn, well as long as he will tolerate them. Our day nurse, Marjean, seems to be pretty diligent with Chase wearing them, so that puts our mind a little more at ease.

I'm not one for many words, so I'll keep this short. I do want to thank all of our family friends for all their support last year and early this year. You continue to amaze me with your love and support! Here's a few pics over the past few months that I hope you'll enjoy! Hopefully I figured out how to post pics and videos! I'll try my best, but our master blogger (katie) might have to add a few more in the next few days!

A Whole New World

Chase had his surgery yesterday to open his airway and fix the exotropia of his eyes. The day started off bright and early in order to get to Children's Mercy by 6am. We met with the anesthesiologist and the surgeons, gave our hugs and kisses, and off Chase went to the OR. Dr. Olitsky would go first to fix Chase's eyes, then Dr. Wei to work on his ears, nose, and throat. After about 45 min, Dr. Olitsky came to tell us everything went great with the eyes. Then, about 30 minutes later, Dr. Wei called us to tell us she didn't think Chase needed tubes in his ears afterall, and she did a bronchoscopy to look at his airway and saw that scar tissue had developed in his nose from all the NG tubes and things when he was in the NICU, and also scar tissue right below his trach tube. So these scar tissue formations were narrowing his airway and needed to be removed. She originally thought she would have to drill the bone in his nose to open his nasal passage, so we were happy to hear it wasn't going to be as invasive. And so the 3.5 hr surgery turned into about 2.5 hrs :) When she was finished, she showed us pictures of his airway before and after, and said everything went great and she was excited b/c he could possibly go home without a trach. We were shocked since we both decided it would probably be spring before we even attempted decannulating him. But this also excited us, and we were cautiously optomistic (as Chris always says). :)
When we went back to recovery, he looked pretty pitiful with a bloody nose, bloody trach, and bloody tears. But after a couple hours he waved at Daddy and cracked a smile, and we knew he was already feeling better. But he was pretty uncomfortable most the afternoon and evening, and did not like all the wires and tubes. We tried plugging his trach but he immediately struggled and his oxygenation dropped, so I just assumed he'd still go home with the trach. Then the ENT team came in before 7am, and since he did well overnight, it was decided to pull the trach and just tape gauze over the hole and monitor him during the morning and while he's napping. He did great, and kept his oxygenation up, so we were discharged about 1pm, and he "talked" all the way home and seriously hasn't stopped. It's wonderful! And it's a whole new world for us!


Waving at Daddy




No Trach :)


And my oxygen sats are still 100% :) :) :)

Halloween, etc.

Chase had a fun Halloween. We took him to the park to swing for the first time and he LOVED it! He could have stayed all day! I'm hoping for a mild winter so we can continue to take him over the next several months.








Chase dressed up as a frog this year. He luckily doesn't mind hats or hoods, so he stayed in costume all evening and loved handing out candy and seeing the other kids dressed up.

From Fall '09

Chase seems to be doing good with his new nurse, Marjeanne. She has been working twice a week for the last month, while nurse Cathy has continued M,W,F. Marjeanne has worked out really well and seems to work with Chase on different recommendations from his therapists as well as pushing the Passy Muir (speaking valve for the trach) and the hearing aids. Marjeanne agreed to work five days a week, so Cathy's last day was Friday. She's been with Chase for over a year and they really developed a bond, so it was hard to see her go despite all the issues we had with her. She really cares for him. But we're excited about Marjeanne and think this decision was in Chase's best interest.
Chase is scheduled for his surgery tomorrow. We were worried on Thursday because he had a fever, cough, and congestion, and we were afraid we would end up having to reschedule the surgery for the second time. But thanks to lots of prayers and the grace of God, he was back to normal by Friday! We're anxious to have the surgery behind us and to be one step closer to losing the trach. And this Thanksgiving we will have LOTS to be thankful for!

Happy Fall!

I was finally able to find some time to write this well overdue blog to let you know what Chase has been up to these days. I think I can safely say one of his most favorite things to do is climb up the stairs, and then slide down the stairs on his belly. They say it's a great work out for him, and I'm pretty sure it is for us as well. We've held off on baby gates thus far, but we may have to break down soon. He's walking better with his push toy, but still not taking steps on his own quite yet. He's eating great! And we've introduced many table foods to him. He loves Veggie Straws, scrambled eggs, animal crackers, and ice cream of course :). We're still giving him 2 or 3 bottles of Pediasure a day, but we don't have to give him as much through his g-tube because he is taking so much by mouth. He is so active now, it's very tough to g-tube anything, so we're thankful he's eating so well. He's up to 17.5 lbs now, and the doctor was pleased with his growth. He's still way below where he should be for his age, but we try not to even pay attention to that anymore. As long as he's gaining and growing, we're happy. He makes lots of baby noises, especially when he has his Pasy Muir valve on. But he still hasn't said any words that we know of. He's clapping alot and he now waves "bye bye".
We finally found a new nurse who seems like a good fit, but she can only work Tues, Thurs. Her first day with Chase was yesterday and it seemed to go well. He was happy when I got home, and I had mom stop by to check on them and give me peace of mind. We've been trying to find a replacement for nurse Cathy for quite some time, but haven't had luck. And even though we had our issues with Cathy, she really cares for Chase and they are so comfortable with eachother, so it's making this small transition a little difficult, but we have faith it will all work out. She seams very eager to work with Chase developmentally which is a total change from Cathy.
We thought we were out of the woods since Chase had H1N1 at the end of August, but he caught another bug a couple weeks ago and was in the hospital again for a few days. He was really acting fine, but was breathing a little harder and his oxygen sats were down. So we took him, had the same ER doctor as we did in August and she remembered us (never a good sign). They basically just put him on oxygen and sent him home after he didn't need it anymore. Our medical supply company provided us with ALOT of extra oxygen. So if this happens again, we might be able to avoid going back into the hospital. But hopefully we can manage to stay well for the rest of the winter, and especially in November before his surgery!!!
We celebrated his homecoming from the hospital by going to Louisburg Cider Mill for some fresh apples and apple cider :) His occupational therapists also lives out there and has a therapeutic riding center, so we visited her. Her therapeutic riding center is for children with special needs. She has them ride horses, and the horses gait is supposed to mimic us walking and strengthen those muscles, as well as a host of other benefits. It's very cool, and we plan on getting involved and having Chase ride next Spring. http://www.prairiemeadowstherapy.org/



Video of Chase crawling up/downstairs

From Fall '09

From Fall '09

We had a great summer with Chase! Much better than last year :) He loved swimming and being outdoors! Hopefully next summer he'll be without his trach and we won't have to worry as much or be as careful in the pool. We were hoping he would lose the trach this fall, but when he got sick right before his surgery, they decided to cancel. We were really disappointed the surgery had to be rescheduled, but we were more concerned about Chase and getting him well. He ended up spiking a fever five days before the surgery, then lots of coughing and scary bloody secretions from his trach. We thought for sure he'd be better by his surgery day, especially after we started an antibiotic, but he just wasn't getting better. By day 6, his oxygen levels were dropping and we were having to give him extra oxygen, and he was still having bloody secretions. We decided to take him to the hospital, and they admitted him for a few days. It took over a week before he was back to his playful self. It had to be one of the longest weeks of my life! The doctor called the day after he was discharged from the hospital to say he had H1N1 (swine flu) - it took 5 days to get the viral studies back. By then he was on the mend, otherwise, had we found out sooner, I think we would have been especially paranoid. We think Chase got it from nurse Cathy, I got it from Chase, caretaker Scott got it from Chase, but luckily Chris managed to avoid it and stay well. Now we're at least immune for the winter :) We're so thankful he is better, and so so thankful for all of the thoughts and prayers!
They rescheduled the surgery for November 23rd. It seems like so far away. Now our goal is to have the trach out by Christmas - what a wonderful present that would be :) He's doing so well, that I think he'll be ready to lose the trach just weeks after the surgery, but that's just my guess. They haven't given us a timeline after the surgery. He is definitely ready to be done with it. He now tugs at his trach constantly, and has even pulled it out a several times.
Chase is all over the place now, even crawling up and down the stairs. He's walking along the coffee table, but hasn't taken any steps on his own yet. It won't be long though. He still isn't the best eater, but we've been experimenting with all sorts of things. We met with a dietician, and we're now giving him 3 bottles of Pediasure a day to help him gain more weight. He's definitely filling out and getting a little more meat on his bones now. He's up to about 17 lbs, so still pretty little but he's getting there.
Chase loves interacting and watching other kids, but just doesn't have the opportunity to do it enough. So we've been exploring pre-schools and/or programs for kids with special needs. Through a friend, we learned of The Children's Spot, which is affiliated with St. Lukes. We visited last week and were really impressed. They have different therapists (PT/OT/Speech) that work with the kiddos. Chase would go for a couple hours each day. We're on a waiting list, but it sounds like there may be an opening fairly soon. We're trying to figure out how we can do it with our work schedules because Chase would go from 9:30 to 11:30 each day. We're going to make it happen though because we really think it would help Chase and we're excited about it. When he's 2, we hope to get him into The Children's Learning Center. Gosh, that will be here before we know it!
Until then, we're enjoying every second with him.

From Summer '09

You can run...

But you can't hide. Chase is everywhere, even up and down the step into the kitchen and living room. He's pulling himself up on everything too, and climbing onto boxes, and onto bottom shelves of tables. Just when you think you've baby proofed the house...surprise, another bump or bruise. I think nurse Cathy is having a hard time keeping up with him! We're exploring all of our daycare options for Chase now that he's older and really loves interacting with other kids. We've been really disappointed with nurse Cathy lately and her extreme resistance with Chase's therapists and their recommendations and ideas. It's become a huge burden and so frustrating to say the least. If I could just be a stay-at-home mom for awhile, I'd do it in a heartbeat! We're not sure how quick we want to replace her with Chase's upcoming surgery and the familiarity of Cathy. But it's inevitable! I just hope and pray we can find something and someone that is best for Chase!
He's doing really well with his speaking valve and making lots of baby noises! He still pulls out his hearing aids, and then flashes a big grin when reprimanded. It's hard to stay on him :) We go back to the doctor next week for a follow-up visit and for pre-op for his surgery Aug 24, which will be a big day!

From Summer '09

And he's off ...

Chase finally mastered the art of crawling this week...time to baby proof our home. Not only can he crawl, but he's fast! We call him speed racer. Poor Max can no longer lay in peace now that he's one of Chase's primary targets. Chase is so active now he's hard to keep up with. He's taking 2 hour naps now though, so that's been great!

Today was Chase's six month review with Infant Toddler Services, the Kansas early childhood development program. With recent budget cuts, some of Chase's therapists had to be replaced. So we met his new occupational therapist, Kristin, and physical therapist, Jeanine, tonight. We really like them alot and are excited for them to begin working with him. I forgot the goals we listed for Chase six months ago, which included sitting up independently (check) and crawling (check). With his condition, we weren't really sure he'd be able to do either of those things. The therapist think they can have him walking in a few months, but we listed it as our goal for the next six months. We are really feeling good about the progress he's made and one of my favorite Bible versus keeps coming to mind. "With God all things are possible" Matthew 19:26

We are still waiting to hear the results from Chase's MRI. We thought we'd hear something a few days after the procedure, but then found out it takes up to two weeks before the doctor reads the radiology report. Hopefully we'll hear something this week.

Full Day

Chase had his MRI today to follow up on his spine and C1 vertebrae. His last scan was about a year ago and showed narrowing of that vertebrae around his spinal cord, which is common with his condition. They said at that time they were just going to keep on eye on it to make sure that space around his spinal cord doesn't get any more narrow, otherwise they'll have to do a fusion. Chase did great for the MRI and was flirting with the nurses by cracking great big grins beforehand. When he woke up from the sedation after the scan, his fiesty personality came out. He was hungry and wanted food! With his firey temper, the nurse said she was surprised he wasn't a red head. After we fed him, he was good to go. The sedation wore off quickly because by the time they called us back, he didn't seem drowsy one bit. We should get the results of the MRI in the next couple days or so.
His next appt was with the audiologist for a hearing aid check. We've been struggling with his hearing aids for a long time now because he just keeps pulling them out as soon as you put them in. She gave us something called "huggies" that sort of wrap around his entire ear to make it more difficult to pull the hearing aids off. So far it hasn't made a difference. But Chase is old enough now that I think he understands the word "no", so we're going to try that and see if that helps at all....wishful thinking probably. They will do another hearing test in the next couple months to see if his hearing has changed at all.
We set a date for Chase's surgery. It will be August 24. And hopefully after that, we'll be one more step closer to getting rid of the trach!

From Chase June 09

Little video of Chase semi-standing


Little video of Chase laughing (audibly)...music to our ears. He's tolerating the Passy Muir (speaking valve) that snaps on the end of his trach much better. This was really the first time we've heard Chase laugh. It was wonderful!

Summer

This summer is off to quite a different start than last summer. Chase loves the outdoors and going for walks or evening drives in the car with the windows rolled down. So this summer we're spending much more time outside and out of hospitals :)
Chase is sitting up strong and crawling (crawling backwards, but crawling nontheless). It's our goal, as well as the physical therapist, to get him crawling forward by the end of the month. I think we'll do it. We had our follow-up with Dr.Gratny and Dr. Wei (Ear Nose Throat doctor) yesterday. They passed a little camera down both nostrils to see how open they were and to look at his vocal cords. One side is completely open, and the other is a little too narrow. So they are going to proceed with the surgery to open that side to hopefully allow him to breath well enough that he won't need the trach anymore. This will probably happen in August. But we'll keep you posted. We're hoping and praying it all works out! We're working on increasing his tolerance to the speaking valve, a sign he's growing and ready for the surgery. It's really fun to hear him finally make baby noises, even if it is just slight little sounds.
He's only 15 lbs now, which kind of goes along with his condition. But we're going to try to feed him more and fatten him up a little more. He's doing great eating baby food, and we really only have to use the feeding tube at night to put a little more food in him.
We've taken him to the neighborhood pool a couple times and he loves it! Here are some pics to share.

First Birthday

It's so hard to believe it's been one year since Chase's birth. Chris and I spent alot of time re-living the moments leading up to his birth, and the moments after. In many ways, it really does feel just like just yesterday, and in many other ways the last year feel like a lifetime. But one thing is for sure, our life is blessed and much more meaningful since Chase arrived. I think of the person I was before Chase and I don't even know her anymore.
Chase unfortunately had a bit of a bug on the day of his birthday. He kept spiking temps, and even Tylenol and ibuprofen wouldn't help. We called Dr. Gratny who said to give him another 24 hrs and if he isn't better she would see him. Thankfully he improved on his own and was 100% by Saturday when we had his little birthday celebration. I think he had a great time. We sure appreciate all the wonderful friends and family we have!!!!






















-Chase has to wear a patch on his right eye for 6 hours a day. His exotropia, or wondering/weak left eye didn't go away afterall. We follow-up with the eye doctor in a few weeks, and if it's not improved, then he'll have a little surgery. We call him our little pirate...Arrgghh.