To be honest I was going to go back and find my Facebook post but I don't have the brain power to search from my phone. So I'll retype it from memory.
Dacotah is 1 month away from starting preschool at the school where his sister goes. I'm both nervous and excited for him and have already talked to his teacher about his allergies and his basic needs. The biggest thing that will keep him the safest is making sure everyone washes their hands before entering the room.
I'm not 100% sure yet but he seems to be less sensitive to contact to milk. I've reintroduced small amounts of dairy in my diet outside of our house and I'll kiss him when I get home and he's not having lip prints in the form of hives like he once did. I'm paranoid of trying a skin test to confirm because the last time he ended up taking Benadryl for barely touching the tip of a chocolate bar. May be best to try it again when we are home and can keep a close eye on it and see how he does. Another option would be to repeat the blood test with Alcat... Something else insurance won't cover...:(
We debated a lot with Big sister she really wanted to go to public school this year. But honestly I do not like that the schools here only teach SOLs and they don't have textbooks at all in middle school???? We debated with ourselves if it was best to send her anyway or leave her where she's been since she was two and a half. We have compromised that at least one more year so Dacotah has someone at the school that he knows would be best. That way too she would be able to help spot if he needs mommy called in the event of an allergic breakout.
I need to contact the department of social services and see if they provide assistance in tuition for Dacotah since his ISFP states going to daycare/preschool would be a difference. That would help a lot with the cost and maybe he could go more than two days a week. So yeah lots of financial decisions on top of weekly OT and other specialist appointments.
He had an appointment with the ETSU pediatric specialist who confirmed Dacotah does have Klinefelters Syndrome which basically says he has an extra X chromosome in his DNA. Instead of 46 XY he is 47XXY. Klinefelters can cause learning disabilities and 27% of patients have Autism and 68% have or develop ADHD. The specialist made the comment "but he makes great eye contact which isn't autistic, but he doesn't like touch at all which is autistic"... I really wanted to say that's awesome that he does make eye contact and yes it is atypical but it doesn't not rule at autism... As much as I wish it did everything else from the touch, severe sleep disturbance, sensory overload etc confirm his diagnosis. With Klinefelters most men do not know they have it until they are married. They use to believe men with XXY were sterile and couldn't have biological children, thankfully with IVF options this is no longer the case. On a positive boys with Klinefelters tend to be taller, by age 5 he could already be off the growth chart for height!
This isn't a debate about what is or isn't it's just frustrating when I've heard but he's normal, yet again this week from family. NO HE IS NOT NORMAL, normal would be walking, talking, smiling, jumping, laying in the middle of the floor screaming terrible two year old!!!!!!! Normal would be him talking in 2-3 word sentences instead of needing to sign I love you, he would be saying it... So PLEASE FOR MY SANITY stop outwardly telling me he is normal because it sucks having to say "oh he doesn't talk" when you keep telling him to say something over and over expecting to make me look like an idiot...
I have to say the blog keeps me sane, I sometimes hesitate on putting my feelings out there but it helps deal with everything going on. It's easier to go back and say here is what is the same versus different.
OT is coming every week now. But I am getting super frustrated with Speech, the second therapist they assigned was due with her own son six weeks from the day we met her. Which is fine I have no problems with that, but he's not had speech since we came back from vacation. I'm going to find out what's going on there hopefully later today. I also need to get his ISFP with EI changed so they aren't
so focused on his feeding. He had an appointment at UVA for their feeding program in August some time. I don't know yet if we will keep that appointment. He eats other food, granted its chicken and French fries for breakfast lunch and dinner but he's not constantly nursing anymore :) we have gone to Walmart without massive meltdowns but he has to walk and had a habit of running off on the spur of a split second. :( He still isn't talking per se but on several occasions, he looks at us points to something and jabbers... He is getting closer every day and in his own time he will talk our heads off.
After more than 2 years we figured out a way to get his medicine down with him screaming and spitting half of it out but a fraction of the dose has helped him tremendously the last three nights. It may sound mean, disgusting, cruel but with the genetics being different he is not able to sleep on his own without waking every 2 hours all night long. With Doctor prescribed hydroxyzine (an antihistamine like Benadryl) he is sleeping!!!!!!!!!!! We give it to him when he says he is ready to go night night. He will point to the bedroom and say night night (it's not clear but we know what he is asking). I give him his medicine and he's sleeping at least 5-6 hours wakes up once to nurse and sleeps until 7-8am. The last three days he's smiling more and seems to be calmer with less screaming fits.
Update on 7/29 I started writing the top portion two nights ago, and just now got on the desktop so I can finish this post. Today Dacotah said "I love puppy" He signed it as he said it. I was beyond thrilled and the smile on his face let me know he was excited that we understood him. He is smiling so much the past four days, it's great to see him happy and interacting more.
I found out today that he will have speech with Early Intervention three weeks out of the month. The 4th week they will leave open so we can take him to Mini Miracles to have OT and Speech in their facility on the other day of the week. I'll need to set that up soon.
Honestly, this past week has been the most stressful that I have had and I am not sure why. It could be that we have gotten his nursing down to 3 times in a 24 hour period, but whatever is causing the mood swings it can disappear anytime.
Lets wrangle little man to bed thankfully once we get him down he is still sleeping 4-6 hours at a time. Which is amazing compared to every 1-2 all night for 2 years. :)
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