He is doing very well right now. He is always having some issues going on, but in general he is doing well. He just saw the fabulous sleep specialist, Dr. Pfeffer. She changed his dose of Trazodone and added a med called Clonidine. In case you were wondering..... the sleeping had gone to a point of 3-4 hours of wide awake in the night again. Sigh..... one morning I woke to find THIS all over his wardrobe closet. Awesome.
He hasn't seen GI or the Feeding Clinic down at Primary Children's medical Center because I had to reschedule his appt due to Kaitlyn having RSV. But over the phone we did some med changes and did one HUGE change.... formula. We were able to put him back on Nutren Jr. a milk based drink (basically like Pediasure) and he has done fantastic on it. Some minor added constipation problems, but worth it for the fact that he is now eating much more by mouth. I still have no idea if we will ever get rid of his G-tube since we use it for water every day. He just won't drink enough to keep his crappy GI system running smoothly. But.... it's a huge step in the right direction.Speech is coming along sooo slowly. He adds a new word about every 3 months. I am in the process of looking at some different things to do with him for that. He loves to mimic easy sounds though and keeps us laughing with his attempts.
Now for the picture below. One night Scott was trying to see how well Josh understands things and was giving him weird directions. Most everything was a little over his head and he didn't get. Just to be funny Scott told him to squeeze his cheeks. This is what he did:
Now these next couple pictures really show his personality I think. As you know Scott is finishing off two bedrooms in the basement for Trevor and Jordan. So for the last several weeks he has been spending hours and hours down there. On occasion he has things he needs Trevor and Jordan to help with. Because of Trevor's sensory issues, we bought some medical gloves for him to wear. Scott even wore them a couple times for things. Josh caught onto that and for the last month or more gets a hat and one glove on to go 'help' downstairs. It is always just one glove which makes me laugh. And we don't know why he thinks he needs the hat unless it is because it is cold down there. But he is always putting this hat and one glove on (never gets the fingers in the holes right or even the glove right side out LOL) but he is very adamant that he wears this. It is just so stinking cute!
And the last several days my mom has been coming to help strip off wallpaper in the room that will be Kaitlyn's. Believe it or not, Josh was the biggest help to her. We used a fabric softner/warm water mixture to peel it off. My mom would get several places started along the wall and Josh would come behind her and peel it off. She was amazed at how helpful he really was. And he worked with her for 2 solid hours on saturday either stripping down the paper, or washing the glue off with warm water and a scrubber. I have never seen Josh that focused on anything before. (The ADHD meds we have him on are really working!!) I love my little bug so much. He is going to be 4 in just a little over 2 months. I can't believe it. I am trying to get all the snuggle time in right now because soon he won't be interested. I don't know what I will do then. He is a sweet boy that has overcome so much and deals with so much on a daily basis that most people would give up. Not my Josh. He just chuggs along with his happy go lucky personality that I love so much.
2 comments:
I love that little Joshie boy! I laughed the first time I saw him with his hat and glove. I hope things get worked out with the night time.
He is so stinkin cute! I can't believe he is 4! Or that you are up that long every night!
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