Tuesday, June 23, 2015
Im so happy that Summer in finally here! It is by far my favorite time of year, I love the flowers, the beaches and of course s'mores!! Its hard to believe that its almost the end of June, but time flies when your having fun!
We have been pretty busy since I last updated so let me get everyone caught up. Westin had surgery on his upper lip and tongue in the middle of April, this was a really quick procedure which was good, but he did have to be put under for it. Things with this went well, and didn't slow him down one bit. 2 hours after the procedure he was asking for potato chips! Um NO WAY!!! It has helped some with his speech but I was hoping for more... his speech therapist seems happy with his progress so I guess I should be to.
We also were in Minneapolis for Spina Bifida clinic and a bunch of tests. We were not looking forward to these tests because they are painful for Westin but its something that has to continue to be monitored for the rest of his life. There was a lot of good news and also some not so good news. The good news was that his bladder is appropriate size for his age and that also his bladder can hold the appropriate amount of urine that he should be able to hold. His bladder walls have not gotten any thicker, and when his bladder was filled with saline his pressures didn't rise and he didn't leak. Both which were very very good news. We will need to follow up with Urology with in the next 2 months for some more testing on his bladder because the one test showed that he wasn't emptying all of the way, and there is some concern that this can cause UTI's. Also the one test showed that he was really constipated. I had a feeling about this, he was getting a natural laxative daily but it just wasn't enough. Constipation is a really common problem in kids and adults with SB, things just move along a little slower and it causes issues. So we were instructed to do a clean out and then switch him to Mira-lax daily to keep things on track and moving as they should be :) We are still getting the hang of it and I don't know if this is a long term solution or if we will need to figure something else out down the road.... time will tell.
The neurosurgeon was happy with how he is doing as far as mobility goes. We just need to monitor for symptoms of tethered spinal cord. Which happens in about 25% of kids and its more common during growth spurts. Physical therapy was also happy with the exception of his right leg. His right leg has always been weaker, same with his right foot. He has very little feeling in his right foot so he may need a little more support on the right side as he gets bigger.
We have continued with speech therapy 1x/ week and also PT 1x every 2 weeks.. However we are taking a therapy brake in July which I'm really excited about. This will be good for Westin... I think hes wore out with all of it and I cant blame him.. He has been doing therapy since he was 5 months old.. I think he deserves it!
Westin has also started T-ball which makes me so happy. We were never sure if this would even be an option for him, so its really fun to see him out there running the bases and hitting the ball. After about 30 minutes he complains about his legs being tired. He has started to do this more and more. So we will continue to monitor this as well and see if the next time he needs a new set of braces if we will need to go back to AFO's at least on the right side.
Thursday, April 2, 2015
We also go back to Minneapolis April 20 and 21st for a round of tests as well as SB clinic. This time he will have some testing done on his bladder and kidneys that we haven't had done in over a year and half. Last time we had a couple of these tests done we weren't able to complete them because they were simply to painful for Westin. I pray that things go better this time and we will be able to distract him with the I pad. These tests measure the size and thickness of the bladder as well as how much its able to hold and also what grade of reflux he has. It also measures the pressure in the bladder. All of these things are very important, because you need to have a healthy bladder and kidneys. On the 21st we will meet with Westins team of Drs's and go over the test results as well as what our plan is for going forward. We will get a new RX for braces for Westin. It will be interesting to see what they suggest. If they think SMO's will still be OK or if they will want to move him back to an AFO. His local PT thinks that hes doing well with the SMOs and that we should be just fine continuing with those.
We also have the BEST news for Westins Urologist. Back at the end of February Westin stayed with my mom for 5 days and she was able to potty train him! This is almost unheard of with Spina Bifida kiddos. This is such a HUGE accomplishment, words cant even describe how proud and happy we are for him!!!!
Now if it would stay warm, so we can get outside, play in the mud, and find bugs!
Tuesday, January 13, 2015
We have dropped down on speech therapy to every other week. Therapy feels like he is tongue and lip tied, which irritates me to no end. Why wasn't this checked when he had his tonsils and adenoids removed?? ANNOYING! so next week we have an appointment with another ENT to see if she thinks its causing some of his feeding issues. At this point I don't know, but wouldn't be surprised if she told me he was because tongue tie does run in our family.
Other then that minor hiccup in the road things have been pretty uneventful. Just the normal things going on with PT still 1x/week and early intervention ended today which makes us sad. We looked forward to our weekly visits and when you have seen someone every week for 3 years it will be really weird next week when she doesn't show up!
Westin is learning so many new things. Its so fun and rewarding to watch him as he changes and grows. His little mind is always going. He is always one step ahead.
What a blessing he has been to our family. I wouldn't change anything for the world. Happy Birthday little one!
Monday, December 8, 2014
I hope this update find you all happy and well. I cant believe the Holidays are right around the corner....YIKES! I feel like every year they come faster and faster!
We are still as busy as ever. Just recently we dropped back down to physical therapy 1x/ week. We also have infant development that comes in the home 1x/week and also speech therapy 1x/week which is 45 minutes away. So pretty much the theme of my life is run, run, run... but I'm so thankful that I am the one that gets to do the running with him. Just this past week we received a new pair of SMO/AFO braces. This is a completely different system then we have ever had before, and so far its a complete flop. We will see how it goes later in the week, because we are having the SMO remade. Oh the joys of new braces. We go through this same headache every 6 month of so because of his feet growing.
We have also started speech therapy. Westin has a very nice vocabulary, however because he had large tonsils there are some movements that his tongue doesn't do voluntarily like it should. Like touching his tongue to the roof of his mouth or being able to wiggle it from side to side. His top lip is also "tied down" as they call it so in the future that may need to be snipped. My hope is that after a few weeks we will be able to go down to going every other week. I don't want to be driving 45 miles one way for therapy when its -20 degrees outside, because we all know that's just around the corner.
Otherwise we continue to fight through this cold weather and hope that summer will be here before we know it! The first day of summer is only 194 days away... but whos counting!
Stay warm and have a very Merry Christmas!
Thursday, October 9, 2014
So I brought Westin to the dentist for the first time.... Ok WOW! Talk about a total shit show. I could tell when he was playing toys in the waiting room that he was feeling completely nervous about being there, which I understand. It was a new place, new people..... ok so the hygienist came back to get him and he completely lost it. He proceeded to scream as hard as he could for the rest of the appointment. It was awesome! I'm pretty sure everyone that was sitting in the waiting room thought someone was trying to kill him! But they managed to get his teeth counted, and a sealant put on.... and of course they would like to see him back in 6 months for more sealants which im sure will mean more screaming!!
So on to the Speech/Physical therapists. I talked to his speech therapist about the horrible appointment from the week before. She didn't have a lot of input but she did say that I was 4th person to ask her about oral motor therapy so she will be taking some classes to be trained in it in November so that will be great! In the mean time I did contact a different therapist that works at the other place we went and set up an appointment for a consultation to see what she has to say.... I'm hoping this time around it will go a lot better since it will be with someone else.
I also talked to his physical therapists about a few concerns, so we have increased his PT. He now goes 2x/week. Mondays and in the therapy room, and Wednesdays are in the pool. So hopefully this will help keep the strength in his legs. Anytime he has a little growth spurt this happens and he starts to fall more so its just a continuous work in progress.
Other then that we will go back to Minneapolis in 2 weeks for a renal ultrasound and also Spina Bifida clinic. I always look forward to these appointment so I can get the Dr's input on how they feel he is doing. Some of my questions for them involve his leg braces, and see how they think he is doing with his SMO's since they recommended them the last time we were there. My other questions have to do with potty training and how we will go about that!
Also I have to share a link to a little write up I did about Westin that was featured on Gillette Children's website. I hope you all enjoy and have a great rest of your week!
Tuesday, September 23, 2014
Sometimes I find it hard to not always be looking for something to be wrong with him, its either a leg brace that isn't fitting quite right, or the way hes standing is a little off, or the way he says certain words are hard for others to understand.
For the past few weeks I have noticed that Westin has been drooling more, and for the most part he is still breathing through his mouth. I wasn't sure if these behaviors where from having his tonsils out and just learning how to breath with his mouth closed, after all hes been breathing through his mouth instead of his nose most of his life. So because we were questioning these behaviors we ended up making an appointment with a speech pathologist who specializes in oral myology. We met with her in Fargo and she played with Westin for a few minutes and she also had him blow bubbles and drink through a straw. After watching him for a few minutes she started with her laundry list of things that he does wrong.....which was pretty much everything. We left feeling completely defeated... we have worked so hard to get him to the point that hes at and for someone to tell us in 5 minutes that pretty everything is wrong is so disheartening. While I understand this is only one persons opinion it still sucks.
So I will talk to the local speech therapist and physical therapist on Thursday to see what they think and where we go from here, I also made Westin an appointment with a pediatric dentist on Friday to see what they also have to say regarding his bite, and the position of his teeth in his mouth and if the way he holds his tongue between his teeth is doing the damage that the other speech therapist said that it was.
Its times like these I wish there was a perfect answer or a parenting handbook to tell me what to do, but right now its just one day at a time......
Tuesday, August 5, 2014
We survived Westin getting his tonsils out and he did awesome! We really weren't sure what to expect but I dont think we could have asked for things to go any better. As soon as we got out of the car in the parking lot of the hospital he started to cry. He just knew something was going to happen even though we made sure not to tell him about it because they he would of been even more worried and talked about it nonstop. This poor kid, he has been through so much. 4 surgeries and hes not even 3?? Somethings in life are just so unfair.
The surgery took just over a hour. I think the part that take the longest is getting him prepped once back in the O.R. After the surgery his ENT Dr. came out and talked to us about how things went. He said that by observing him and how he was breathing before the surgery that there was no question that he had sleep apnea, which was being caused by the size of his tonsils and adenoids. He also said that there was a piece of skin that was connected from his uvula down to his vocal cord which wasn't suppose to be there. He also clipped that off and placed a couple of stitches.
Once in recovery he did take a could of sips of water for me. He was then transferred back up to his room where he proceeded to cry for 4 hours. The nurses said it was because of the anesthesia. Once they gave him his pain meds again we could tell right away when they started to work. He was more alert, not crying, and willing to drink. Once we drake a cup full of juice they sent us home! As soon as we got in the car, Westin was asking for chocolate milk. Probably not the best choice, but he earned it! So we filled his cup full and within a minute the milk was gone and he was fast asleep! Once we got home he was happy, talking and asking for popcorn. This time he didn't get what he wanted! Everyday we have seen improvement in his sleeping. There is no more snoring, or tossing and turning. He is a much more peaceful sleeper. The only problem with that is that he is a much earlier riser!
Have a great week everyone! Make it count!