This title is brought to you by my humors son Sean. Tonight before our family dinner. H was running around climbing onto things knocking things over and getting all sorts of excited his siblings are all under one roof, that he just decided to title his life the adventures of Diaper boy and mom lady. Yep I am mom lady. Cleaver little nickname huh? I guess he has a point this is pretty much an adventure and I am just his sidekick along for the ride.
Backing up a bit since I got a wee bit ahead of myself. Tuesday H had his weekly ECI appointment. Since I am working when they come work with him I left a nice long note about progress, this way when she comes she can talk to his teacher and get straight to work. The note consisted of his progress, new concerns, what we are trying and what can we do to help. He was having some problems with aggression that day along with some meltdowns. Staci gave me a list of things to start doing, keep doing and what we want to try. We have been told to get a small trampoline to help him jump his aggression and anxiety out, weighted blanket and vest for calming his anxiety, we need to keep up with the things that vibrate such as his toothbrush, the soft silky things also help sooth and calm him.
They have also decided that they are going increase his time to 45 min a week. We are still awaiting when speech therapy will start. I am hoping next week we will know. Next Wednesday I have a meeting with his coordinator. I am going to bring up a few things that I keep forgetting. At least I know if I write it down Staci looks at it and addresses it. I am so glad to have such a great team all on top of his care.
His apt at Cook's Childrens Hospital in Ft. Worth went awesome! We saw Dr. Pfaff in Pulmonolgy and he is the most amazing specialist I have ever come across. He has such a calming presence and just this way about him that H was totally calm. He did everything he needed to do with H without him freaking out on him. Chris and I sat there with our jaws on the floor. Where had this man been all our lives? The added bonus of our new doctor is that he does have a office out here in Abilene so from here on out as long as he is out here we can see him at his Abilene location. SCORE!
We spent about 20 minutes discussing his past history with breathing problems. I was prepared for him to say something along the lines of " he is fine no need to worry" or " I am sorry I have no idea what the problem is with your son." Well we got the total opposite. He was very concerned and felt sorry for H. He has educated us on Abuterol and Xopenex and we now realize we had been under medicating our child. Abuterol is much better for him but, since he knows our hesitations and H's situation he gave us some tips and tricks to help fight the side effects that it can cause. He also knows that H does not want to be stuck to a nebulizer all the time so most of his meds can be done via his inhaler and chamber and only needing the nubulizer if he is really having a hard time. Another huge bonus for us. Like I said before we got 2 years worth of answers in 20 minutes. I left feeling this huge sigh of relief and knew that things where going to be just fine.
We got to Dallas had a bit to eat and headed out to pick up the kids. I kid no you not the girls packed every last thing that they have ever owned! The truck was pretty weighed down lol. I was pretty excited to see them and of course H was very happy to see his sisters. He can say Hannah now and well he refers to his siblings as Hannah ha ha. After we got the girls we headed out to pick up Sean. Thankfully he packed lite. We packed into the truck and made our way back to Abilene. We got home around 6:30 did a quick food run made some pizza and called it an early night. Hey have I mentioned how much stuff the girls brought?! Goodness it was insane to find a place to put everything.
It has been great to so far with all the kids. They had a baby sitter today but next week they get shipped off to the Youth Center on base. Ella will go to day camp all day and Sean and Hannah will go to the Tween Wing. They will get to do all sorts of things and I know they have field trips I just have to keep an eye out so they can do them. Ella wants to do soccer camp and I think Sean wants to do basketball camp but I am pretty sure that starts next week. I know the YC will keep them busy so I am not worried.
This weekend we are probably heading to the pool tomorrow. I know I must be brave to take 4 kids to the pool. Tomorrow night we have a pending BBQ with friends. Sunday is family day and hopefully meeting up with the Westbrook's. I went from quiet weekends of hanging around the house to now needing to find some things to do to keep them all from climbing the walls. I am sure it will be just fine though.
Well you know it is summer when you look up see that it's 8pm and dinner has not been made. The kids are making sandwiches and then winding down for bed. I love seeing them all at the table together. For now my heart is happy and there is a big ole smile on my face!
Since life has given us some entertainment who am I not to share. There are up's and there are down's but in the end I have the best family I could ask for. It isn't easy when you add a child who has special needs into the mix. However it does keep things interesting. So sit back and enjoy the ride.
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