Friday, December 23, 2011

Update on the iPad

Just thought I would do a quick update on how things are going with the iPad.

Josh LOVES it. He is doing so awesome with it and I am so happy!!!!

(sorry for the quality of pictures and video. I really need to stop using my phone and use the actual camera!)

Saturday, December 17, 2011

An amazing Christmas Miracle!!!


I have been on such a roller coast of emotions this Christmas Season... one that has had me laughing one moment and crying another.

On tuesday of this week a true miracle happened. No.. it wasn't Scott's Birthday, although it was a nice birthday surprise from him. (love you, Sweetie).

My amazing friend Alison Duffy (she deserves so much for doing this...if you know her make sure to tell her how special she is!) decided that she was going to do some sort of a fundraiser to get Josh an iPad. She understands how much it could help him, and how much he has been through his entire life. So she was going to set up a website to have people donate money towards it. On tuesday morning she called a friend of hers to find out if she had an suggestions or could help her word things on the blog she was going to create. Her dear friend told her to wait a little bit, she was going to make some phone calls before Alison got going on this. In less than an hour she called Alison and told her she had an iPad for Josh. Alison was speechless and really shocked. She called me to tell me and I just kept saying..holy holy cow... wow..... pinch me please..I didn't even know what to say! What an amazing surprise. At first it was unclear how this came about, but now I have a name of an amazing couple whom I of course have never met, who bought this iPad for Josh.

This sweet couple have no idea how they have just changed a life. Already... 4 days later Josh is picking up on some of the apps we have gotten on there and I can't believe how good he is doing already. We are still in the process of getting a communication program up and running on there, but mostly it has been due to lack of time. I also have been trying to get other mom's of special needs kids to give advice on apps and ect. It is such a busy time of year that it's been hard to get with the people I need. But we have it up and going for him for some basic stuff and he LOVES it.

I am still in shock that someone who has never met me, my son or my family would give such an amazing gift. It truly is a Christmas Miracle!

Thank you Alison and our Donor! We love you!

Sunday, December 11, 2011

Another Official Diagnosis

This past Wednesday, December 7th, Josh had another evaluation. This was with a psychologist through Children With Special Health Care Needs (CSHCN). We have been waiting for a couple months for this appointment. We were having Josh evaluated for Autism or any other behavioral disorder. His Genetics Doc really pushed for this after our last appointment. 6 weeks ago I filled out several questionnaires and evaluations for Josh and mailed them to Salt Lake to be scored so they would be ready for this appointment. Josh's preschool teacher also did the same thing. I was really nervous that we would not be able to leave this eval with our diagnosis. You never know how Josh is going to be at any given time.

But I was worried for nothing. This appointment went so well I could not believe it. Josh cooperated PERFECTLY. He was 100% himself so she got an extremely accurate eval of him. He did not throw any meltdowns during the process so we were able to move through and get it done in about 2 hours. (He did throw a meltdown as we were leaving with head banging and everything so she did get to see that too..)

So....what was the outcome? Autism.

I was surprised where he scored though. In the official eval the doctor did there is two categories: Autism and Autism Spectrum Disorder. When we first met her and began the eval she thought he would probably be on the Autism Spectrum Disorder category. But as the eval went on and she began to score it at the end, he fell in the Autism category instead.

She was a wonderful doctor and I actually learned several things in that 2 1/2 hours about Autism. I am so glad to have her join our team of doctors for Josh. I can see that she is very knowledgeable and wants to help as much as possible.

So now the hard work begins.

Josh has had no intervention for Autism at all. I am currently battling the school district about his speech problems. As some of you may know.... the speech therapist at his preschool and I don't see eye to eye at all. I don't think she really wants to even try to work with Josh. I recently (finally) had Josh evaluated with the augmentative team through the district for a communication device of some sort. Their conclusion was that he does not need anything and instead Scott and I need to learn about PECS... which is comical. We have been doing PECS for over a year with him already. I did them with Trevor. Believe me.... I know how to do PECS. They aren't helping. The funny thing is... every single doctor, therapist ect that we see for Josh is STRESSING that he needs something to help him. Pretty much everyone is telling us that an iPad is the way to go. I am so tired of hearing this! I know how much he needs an iPad.... we just can't afford to get him one.

I am feeling alot of relief and anxiety about Josh's diagnosis. I feel relief because now we know. Someone who is an expert was able to tell me 'YES your child had Autism'. I have been on the fence about this for awhile. But now the anxiety is setting in. I know that pretty much the school system is failing Josh. I know that he needs some very specific programs and interventions to help him succeed. I am so sad because I don't really have anywhere that is specific to Autism to take him to now. He is too old for the preschool programs and that is all we have around here. I feel the weight of the world knowing that I am going most likely be left to figure out how to do this. I need to take on being his therapist, interventionalist, ect. I feel the weight of all this on my shoulders and I don't know how I am going to do this. It is going to take alot of research and time to figure out what to do to help him. He is so far behind academically. He does not know colors, numbers, letters, shapes, ect. Even without him being able to speak... if not for the autism he would be able to learn these things. But he is so far behind it overwhelms me.

So as soon as the holidays are over... I am going to begin figuring out what to do. I will do what it will take to help him learn and grow. It will take more time than I have been able to spend with him... but somehow or another I will find the time. I know I will. He is such a sweet boy that has had more struggles in his short 4 1/2 years that many people will have in a lifetime. But I will be his advocate and I will do what it takes.

In the meantime... here is a couple pictures of my sweet boy. I don't know why he happened to have his coat on in both pictures.....

And speaking of Autism.... here is my two special boys. These two have always had a bond that is different than anything I have ever seen. Isn't that interesting?

Wednesday, December 7, 2011

PH Probe Test and Results

This past Thursday and Friday was Kaitlyn's PH Probe test down at Primary Children's. I was dreading spending two days at the hospital with nothing to do but sit in a small hospital room. The day we had to check in was, unfortunately, the day of the massive wind storm that hit the Wasatch Front and caused millions of dollars of damage. I was worried about even getting down there. I made it OK and we got all settled in.

This is what the probe looks like. It is as small as an NG tube and went down her nose and into her esophagus. It measured the PH levels in two different places. We did have to have an x-ray to make sure the probe was in the right place. Of course within about 10 minutes of getting back into our room, she accidentally pulled the probe out. So it had to be placed a second time. She was thrilled. So was I.

This is the monitor that I got to carry around with me. Lovely. It showed the acid levels in both sensors. I also had to change the position on the monitor every time she laid down or was sitting. I also had to hit a couple different buttons when I saw her coughing, gagging or puking. It was a little more involved than I was thinking. Sigh....

To pass the time while there for 26 hours, we took many walks in a wagon. Kaitlyn really loved walking to the South Lobby to see this huge Train set. She would sit and watch the train go around and around forever. 

Her packed into the wagon with lot's of pillows and blankets since she still doesn't sit on her bottom by herself. Then we add the oxygen and monitors and a toy... and it was quite the production. But she was happy and it made it worth it.

By the time we left friday night.... we were both wiped out. Me more than her since I didn't ever fall asleep there. I was up for 36 hours straight. It was just not fun! Kaitlyn fell asleep right before we were discharged and didn't even move while I loaded her in the stroller. She is sitting straight up in this picture and sound asleep. Poor baby!

Since we just got done on friday, I was surprised to get a call from Dr. O'Gorman with the results today!!! I probably shouldn't be surprised since I sat with her in the hospital cafe on thursday night chatting with her. She knew I was nervous about this test:)

Anyway, it was good news! Well depending on how you look at it. Basically the test came back borderline. Molly (Dr. O'Gorman... we call her Molly though!) said that things could go either way. She knows how I DON'T want to do surgery to fix Kaitlyn's Reflux unless there is NO other options. So as long as I abide by some restrictions.. she let me decide if we go forth with a meeting with the surgeon, or re-evaluate in 6 months as long as we do the precautions she wants. Of course I picked the re-evaluate in 6 months.

So what does this mean now?

Kaitlyn will for sure continue to sleep in her swing because under no circumstances can she lay down flat to sleep. I will have to watch what she eats so she doesn't get more than one acidic food per meal. She will tweak her meds a little and we need to make every single effort to do her meds on time, every single day and not miss anything. If she shows anymore symptoms we will revisit this sooner than 6 months.

So.... this was the best news. We know she has reflux... we know it's not getting better. But to find out that we can buy some more time to hopefully let her tone get a little better is the best news possible. I feel like doing a happy dance!!!!

The only other significant thing that they found was some tachycardia (high heart rate) that they want me to call her Cardiologist about. Her sats dropped a bit on a lower rate of oxygen while she was asleep, but nothing significant. But we do know (as if I hadn't been monitoring her at home) that she needs to continue on her oxygen.

Plus as of today she has a slightly crappy sounding upper airway. Super. We will be continuing Winter Isolation.