If you ask Alexa what the highlight of her summer was, I am sure she would say our trip to Adventureland. We decided to take this trip 1) because Alexa had been talking about going back since our visit last year and 2) we wanted to see how Parker would handle this type of environment to prepare for our wish trip to Disney World in the fall.
We thought we had made a huge mistake after the first ride of the day. We started on the carousel and Parker thought that was pure and total torture. We are talking big-time temper tantrum here. It was not pretty.
However, we didn't let that stop us and we took a chance on the Ferris wheel as the second ride. Luckily, that was a hit with all and Parker really enjoyed it! Phew!!!
We knew the weather had a chance of being yucky that day but we took our chances anyway because this was really the only time we'd be able to fit the trip in before it got super hot out. The good thing about the weather was that the park wasn't busy at all. The bad part is when Paul and Alexa were sitting on the 3rd ride of the day, it started down pouring. I mean...torrential rain here. Completely crazy. Parker and I ran for cover and Paul and Alexa just got wet. Well, soaked really. For that matter, Parker and I did too. But soon the rain let up and we were on our way.
We learned that there were some rides Parker loved and some he hated. Anything going in a circle like the carousel was awful. Up and down circles (the Ferris wheel, the chuck wagon ride, and a few others) were fine and rides that went in a circle fast (like the tea-cups) were pretty good too. But Parker's favorite ride of the day was the Frog Hopper. He got very excited about this ride and would giggle and sign "more". We went on it several times!
Alexa and Parker both really enjoyed the water park section of Adventureland. We had to be very careful, of course, to keep water away from Parker's trach but it worked out fine. Looking back, we should have allowed more time for the water park but now we know for next time.
We had a bit of time to dry off on some more rides on the way out of the park. Alexa's favorite "land ride" was the swinging ship. I actually think this ride scared her but it must have been just the right amount of fear and thrill to make it fun.
Paul snuck in one "big kid" ride at the end of the day too.
Except for Parker having a colossal blow-out in the middle of the day and us having to give him (and his chair) a mini-bath in a family restroom, the day was definitely a success. Since it was not busy, we got to hit up all the rides we wanted to and decided we didn't need to go back for a second day as we had originally planned. Instead, we visited the Iowa Science Center in downtown Des Moines the next day.
The Science Center was really nice and I'd highly recommend it.
This is kind of Paul's element so I kind of think he had just as much fun as the kids.
We ended our day with a walk on the bridge over the river. I apparently didn't get any pictures of this. It was very nice and relaxing and we got back in the car right before the rain started up again.
It was a wonderful mini-vacation and I'm glad we made the adventure. I feel more confident in our decision for Disney World as well and we are all looking forward to that trip very much!
We so appreciate all of you who read our blog and ask to keep updated on Parker. We know many of you also pray for Parker and our family and let me just tell you "THANK YOU"!!! The prayers are working and Parker has come so far!!
Parker's checking out an adapted tricycle at therapy
Here are some updates and current prayer requests:
1) Parker has minor surgery scheduled for February 20th. This will be his 10th time under anesthesia. He is getting a second round of Botox injections into his eye muscles, will be fitted for glasses and will get a thorough teeth cleaning.
Parker had his first round of Botox injections last year and they definitely helped. His eyes do align much better than they used to but they are not quite where they need to be yet. The eye surgeon feels like one more round of Botox should help so we've decided to give it a try. The younger he has this done the more chance for success so we don't want to wait too long.
Since he'll be under anyway, we asked for him to get his teeth cleaned as well. Parker HATES getting his teeth brushed and we know we aren't doing a good enough job. We aren't expecting them to find anything wrong in this area, we're just trying to stay ahead of any problems.
**Prayer request: That the surgery and anesthesia go well with no complications. That the second round of Botox works and Parker's eyes will fully align. That any side effects will only be temporary and wear off quickly. That no harm is done.
2) Parker is getting to be quite mobile. He pulls up to a stand all the time, he likes to get up to a tall kneel, he is crawling, he continues to scoot all over the house. He is learning to cruise around furniture also. This is great and we are thrilled!! However, we are also scared. Parker is quite dangerous now. His balance isn't very good and he does fall a lot when he's in a standing position. He does have a helmet that we can put on if we're not right there with him when he's practicing his dare devil moves. However, he's pretty rough on his little body and we don't want him to have any major injuries.
One area where this is of great concern is when he's in his bed. He pretty much outgrew his crib and we had it converted to a toddler bed. Due to his dangerous shenanigans, his mattress is now on the floor but this isn't ideal and he can still manage to hurt himself with this set-up. We very carefully examined all the options for different beds and we're now hoping we can get a "safety bed" approved through our insurance. While I wish there was a different option, this will be the safest option for Parker. We're hoping his insurance will approve one that is custom built for Parker's needs as the ready-made ones just aren't very appropriate for him.
**Prayer requests: That we can find a safety bed that will meet Parker's needs, keep him safe and will work for many years. And that Insurance will cover it. (The one we are hoping for right now is called the dream series made by Beds by George).
Um...yeah, can you say Mr. Danger?!?!
He's still pretty darn cute though!
3) Parker had the Deflux ureter surgery at MAYO done in October. We followed up last week with the local Nephrologist at Children's hospital and had some imaging studies done. Leaving that appointment last week left us feeling a bit bummed out. While she didn't try to interpret the results fully (she wanted to leave this for the Urologist at MAYO), we didn't get the impression the surgery was successful. The Doctor said Parker's kidneys were still enlarged and one of his ureters was actually bigger than it used to be. We also were told a few days later that one of the blood tests came back on the high side so we need to increase Parker's fluid intake pretty drastically.
We were expecting the Urologist at MAYO to recommend either another Deflux surgery like the one he already had done or to recommend an open surgery as this has better odds of success. To our great surprise, the MAYO Doctor said based on the imaging studies, he would consider the first surgery to be a SUCCESS! There is evidence that his body responded to the Deflux paste and it did the job it was supposed to (by creating a barrier so the urine can't reflux like it did before). He said we should take Parker off his prophylactic medication, call him if he gets any urinary tract infections and to repeat the imaging studies in one year!
While on the surface this seems like very good news and we should be ecstatic, Paul and I both feel uneasy. We're nervous about taking him off his meds (he's been on prophylactic meds since birth) and we really don't like playing the "wait and see game". We will review all of this with Parker's pediatrician next week to make sure we're all on the same page and that she is in agreement with the Urologist's recommendations.
**Prayer Requests: That Parker won't get any UTI's after going off his prophylactic meds, that his kidney's continue to function properly with no adverse effects and that his ureter reflux resolves completely. That Paul and I won't stress over this news and take the opportunity to be excited.
Alexa and Parker playing dress up. I think we need some "boy" dress up clothes so Parker doesn't always have to be a fairy or a princess!
4) Parker seems to be doing pretty well with his airway issues. He is tolerating his speaking valve, can handle his cap (where he has to breathe normally with no assistance from the trach) for up to 1-2 hours on good days, and seems to be managing the oral taste trials that we are doing. His trach changes have been a bit difficult over the past few months though which could be nothing or could mean there are some more granuloma's in Parker's airway. His next airway scope (with more anesthesia) is at the beginning of April.
**Prayer Requests: That Parker stays healthy through the rest of winter. That Parker continues to tolerate his speaking valve and cap on a daily basis and we can increase the amount of time Parker can use the cap. That Parker's scope in April will go well and that his airway will look better than ever. That Parker continues to enjoy taste trials and will learn to take and manage bigger bites and more different types of foods.
5) Since Parker is handling his speaking valve and cap better, we are getting to hear Parker "talk" more often. There really is nothing better in the world than listening to Parker's laugh. IT IS THE BEST!!
We'd like to help Parker learn how to make more sounds so that he can communicate with us more. We can tell he wants to say things to us and we don't always know what he wants or needs. Parker does know several signs but due to his fine motor development, learning new signs is difficult. I haven't found a good communication device that Parker can use either.
**Prayer Request: That Parker will increase his communication skills so he can interact with us more and tell us what his wants/needs are. This could be by increasing his language, increased signs, or a different communication avenue. We just need to identify the best ways to facilitate the communication.
There really is much more I could say but I think this covers a lot of where Parker is at right now. Thank you again for the prayers! They mean the world to us!!
Parker has loved playing Peek-A-Boo for a long time but he's never initiated it or been the one to "hide" on his own. We have either covered Parker's face and then removed the cover and said "Peek-A-Boo" or we cover our own faces. Last night, when Paul put Parker to bed and gave him his blanky he started doing this on his own. Paul called me into the room and showed me what Parker was doing. I think we played Peek-A-Boo for 10 minutes. It was great. Parker was obviously proud of himself and had a great time. I'm so glad we were able to capture this "first" on video.
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