Parker has been doing VERY well for the past couple of months. He's met some great developmental milestones, his suctioning needs have decreased a lot, he's on a new formula which has helped tremendously with some GI issues and my sanity, and he's been quite healthy! It's actually been a strange feeling since things have been going so well and I feel myself preparing for a "storm" to hit. The last few years have definitely been a roller coaster with many ups and downs. I feel like since we've been going uphill for awhile now that sooner or later we are going to hit the peak and come soaring down. I know that's a terrible thing to feel and worry about but it's hard not to do with our history.
I think the best part of the past couple months is that Paul and I have felt like a somewhat "normal" family for the first time in a long time. We are doing activities that regular families do everyday and think nothing of but for us they're pretty darn exciting! For instance, we've taken a few family trips to the new grocery store in our neighborhood. I know this sounds boring but for us it was a wonderful adventure and something we haven't done as a whole family before. The best part of all was seeing the look on Parker's face. The aisles at the grocery store were a wondrous sight for my little man and he was beyond excited at the new experience!
We've been more adventurous in taking Parker into public places in other ways too. Parker has been to a couple restaurants with family lately, he went to a graduation party for my cousin where a lot of family was present, he's been shopping at some bigger/less crowded stores, we've gone to a lot of parks and outdoor locations, and we went to a special night at the Henry Doorly Zoo in Omaha called "Dream Night".
Parker's new best buddy, cousin Chad, and Kaelynn (the new grad)
In addition to all our fun adventures, Parker has been making some great strides medically as well. His airway continues to show slow improvements all the time and just yesterday he had his first capping trial during a clinic visit at Children's Hospital. This is where they block off his trach so he has to breath normally. I think he surprised everyone with just how well he did. He didn't breathe through his nose like they would like, he did mouth breathing instead. However, he handled the entire 20 minutes with the cap just fine. His oxygen saturations remained good, he didn't show any signs of struggle and in fact wasn't bothered by any of it at all.
Successful capping trials are the first step towards getting the trach removed. Trach removal is a long ways off but we are at least headed in the right direction and it's very exciting. I'm truly amazed with how far my little man has come. It's crazy to remember where we started and all he's been through in less than three years. He's amazing!
Parker does have another procedure that requires anesthesia coming up in July. This has been one that I have worried about for a long time now. It will be his 8th time under anesthesia. He's getting a follow up brain and spine MRI to see if there are any changes from previous scans and to check on his spinal cyst and spinal cord tethering. The other part of this procedure is we have agreed (again) to let the Neuro-Opthamologist put Botox injections into Parker's eye muscles to hopefully prevent his eyes from wondering out.
You may remember a previous blog where we agreed to the Botox injections in the past. The Doctor wasn't able to make it to the surgery so it never happened. I took this as a sign it wasn't supposed to happen at that point but we've decided it's now time once again to give it a try.
If we don't do something to try and correct his eyes from wondering, we've been told Parker's brain will eventually stop trying to correct the movements and just stop using one of his eyes. This eye would then permanently be out of alignment and more aggressive measures would be needed to fix the problem and the chances for success would be much less. The Botox injections are the least invasive treatment option available and we've been told the chances of the procedure working are 50%.
The Botox injections are definitely something I've struggled with a lot. However, we have done quite a bit of research, gotten a second opinion from another Pediatric Opthamologist, and I've asked just about every Doctor Parker sees what their recommendation is. Everyone thinks it's worth a shot and aside from some minor and temporary side effects the worst thing that can happen is it won't work.
Regardless of all the medical professionals support for this procedure it does still make me nervous so for all you prayer warriors out there I'd love your help. We could use prayers that the procedure itself goes smoothly and as expected with no adverse reactions. That it will be successful and help Parker's vision and his eyes from wondering. That I would be at peace with the decision to do the procedures and know that no matter what happens it's going to be OK and we simply made the best decision we could with the information we had. Also, that we will continue to enjoy our little family, have fun adventures, and not take anything (even going to the grocery store) for granted. That Parker will continue to be healthy and make developmental and medical progress. That Alexa will continue to handle all of this well even when she starts to figure out that our family isn't quite like other families out there and we don't always get to do what others do. That these experiences will shape her into a kind-hearted, caring and good person. And that we won't spend any time worrying about if/when things won't continue going smoothly anymore and instead spend our time focused on enjoying the wonderful times and our many blessings!
Thanks to all of you. Your love and support, prayers and kind words are so appreciated and mean the world to us! And...I think it's working. Just look at how happy our little man is and how far he has come!