Wow... So the kids are on Christmas break. Dacotah missed last Wednesday because he came up with the stomach bug which lasted about 36 hours. Not a huge deal, but then he got hit with a bad sinus infection and bilateral conjunctivitis. The local Urgent Care was great with his needs but mommy had to go a bit out of her way to say "DO NOT TOUCH HIM first". :) The nurse was probably one of the friendliest I had ever met and asked before she did anything. It was the first office other than the one I work that allowed me to tell them his height/weight instead of demanding he stand still.The Doctor debated on giving him a shot of antibiotics because his temperature was 103.3!!! But decided against it when I told her he had never had antibiotics in his life. She had a look of utter disbelief then I went on to say Montana had only been given antibiotics once in the last 7 years for strep. She wrote a prescription for liquid amoxil, but we've been unable to administer it as he spits it out. TRUST ME I have literally tried EVERYTHING at this point. The good part at this point it's viral so the antibiotics wouldn't help anyway. His fever is gone. The pink eye is debating what it is going to do. He is getting antibiotics for that as is his mommy. He likes to share.
Christmas this year was so much fun, despite us both being sick. Our extended family came up from NC but because D was sick, we did facetime while daddy and sissy went to visit them in the hotel. My mother-in-law has been phenomenal when she's around Dacotah as sick as he was, she agreed to watch him so I could take my dad to the ER on Friday night. He had fallen and cut his head pretty deep. (he's okay) She kept me updated and when his temperature started going up was just as I was walking back through the door at home. We stayed at the hotel until daddy got home from work. Honestly, I didn't want to be alone with Dacotah and Montana, and it helped pass the time.
Both kids were again blessed with too many gifts between the grandparents and us, but they had a blast. Dacotah's fishing frenzy game, Hungry Hungry Hippos, melissa and doug house, and his remote control cars are hands down his favorite toys. Montana loved her doll bunk bed, weighted blanket, troll pjs, boots, and sweater. She is one of the only kids I know that LOVES getting clothes on Christmas morning.
Dacotah hasn't said much of anything over the past week. Granted he is not feeling good but last night I did get him to say nite nite mama. He's finally saying dada.... 2 years 9 months and he finally said it again!!! It made daddy super happy to say the least.
I have NOT heard back from the DMV about the windshield, I'm not sure how long they usually take but it's been 3 weeks.... Grrr...
His compression vest was not approved through his insurance GRRRR... Thankfully I found out today that he went on daddy's insurance on the 7th of this month, so I'm going to call Excel next Tuesday and get them to try to approve it through Anthem. Good part is the kids still have their medicaid through Jan, so we will be able to get him a new set of braces ordered and delivered as well.
Travis and I talked about taking him to see Dr. Sprouse in June 2017, we are still debating on if we want to attend the conference, but ultimately we decided we needed to get some more information on his genetics since he's not making a lot of progress with his speech. Yes, he is making some.... but it is still very delayed, and it's obvious when you see him with someone younger. It's going to be a long drive to Baltimore, but if we plan it right, we can get him scheduled with speech and dental at UVA prior to his visit in MD.
He's started head banging, he's always thrown things when he gets upset, but now when you tell him no, his body goes limp and he smashes into the floor. He did it earlier when he didn't tea for his sippy cup and he hit the kitchen floor so hard I thought he busted his nose. :( Hopefully OT and PT will be back next week and we can figure out what's causing the issue. I'm still pointing to frustration of not being able to verbally communicate.
Thursday, December 29, 2016
Monday, December 12, 2016
mommy....down...please
I do believe I can say that Dacotah just said his first sentence ever!!!!!!!!!!!!!!! He climbed into his chair at the table (he has no issues getting into it, but he can't get down without help) after he got his cookies he says "Mommy... (slight pause) down (pause) peas." I have been working diligently with him when we are home in the afternoons together and he's slowly but surely making progress. I really think the communication cards will come into play and will be more beneficial because he will point to them and then echo's back what I say they are. They have a term for that "Echolalia" children his age have usually outgrown the need to echo back but with his delays I'm excited for every word he will repeat back.
We went back to see the endocrinologist this morning to start a treatment that will last three months. I debated on talking about it, but I know some people reading this have kids with KS and can benefit from the information given. There is a study done by a physician in Maryland that shows that infants who received Testosterone therapy have shown improvement in their hypotonia and lack of speech. She contributes the lack of speech to the low muscle tone in the face which prevents the words from coming out. Downside is, we don't know how well he will do because the kids in the studies were under a year old. Because we didn't know about his genetic disorder until he was 2.5 it through everything a bit off. But we are praying and hoping that he can have some positive results and feel after talking with the specialist the benefits of attempting outweighs the small risk because it's a very small baby dose. He will receive one shot a month for three months. He goes back in Jan and Feb to see the nurse, and then in March we will go back to see the endocrinologist and update him on any and all progress he has made over the next three months.
The drive to JC was awful. I could tell this morning that Dacotah was not going to travel well. He screamed and threw a fit when daddy put his clothes on, screamed some more over his shoes, cried all they way to Gate City, cried again in the office, threw his toys, screamed the whole time we were in the office, he honestly cried more being held down than he did from the shot (they use numbing cream, which I was really thankful for). He fussed halfway home and finally fell asleep, which then threw his nap off schedule. It's only 2pm................
We sent the paperwork into the DMV last week, I hope to hear from them soon as to whether they approved the medical clearance to tint the van windows which should help a lot with the sun coming in directly on him. If that doesn't work I'm going to conjure up a sheet that will block the sun out of his face.
We have his compression vest sent into the DME company. It's been nearly a week and I called this morning for an update to be told the orthopedist had been out of the office last week that he will be back in tomorrow. I AM REALLY hoping that he sent it in once they sent him the order to the Roanoke office last week the lady is suppose to call and let us know tomorrow.
Dacotah is doing great with pre-school. He's showing interest in the other kids and said his best friends name the other day when Ms. Monica asked him who the little boy was. I love sneaking in (the best you can with a room full of preschoolers who say "baby, your mommy is here". Most of the time he continues playing until he eventually sees me. The pictures and videos I get throughout the day definitely highlight the improvements he's making and I know we are on the right path with the preschool we have chosen.
We have PT with Pat today and then we get to dress up and go to daddy's Christmas party at work. I'm hoping the down time between now and then will help and Dacotah will be more calm. I'm hesitant to take him into a crowd of people because you see him withdraw when they start talking to him. Maybe..... we will eventually get him a shirt that says My name is Dacotah I am 2 thanks for asking.. lol. In the meantime we will continue taking one step at a time.
We went back to see the endocrinologist this morning to start a treatment that will last three months. I debated on talking about it, but I know some people reading this have kids with KS and can benefit from the information given. There is a study done by a physician in Maryland that shows that infants who received Testosterone therapy have shown improvement in their hypotonia and lack of speech. She contributes the lack of speech to the low muscle tone in the face which prevents the words from coming out. Downside is, we don't know how well he will do because the kids in the studies were under a year old. Because we didn't know about his genetic disorder until he was 2.5 it through everything a bit off. But we are praying and hoping that he can have some positive results and feel after talking with the specialist the benefits of attempting outweighs the small risk because it's a very small baby dose. He will receive one shot a month for three months. He goes back in Jan and Feb to see the nurse, and then in March we will go back to see the endocrinologist and update him on any and all progress he has made over the next three months.
The drive to JC was awful. I could tell this morning that Dacotah was not going to travel well. He screamed and threw a fit when daddy put his clothes on, screamed some more over his shoes, cried all they way to Gate City, cried again in the office, threw his toys, screamed the whole time we were in the office, he honestly cried more being held down than he did from the shot (they use numbing cream, which I was really thankful for). He fussed halfway home and finally fell asleep, which then threw his nap off schedule. It's only 2pm................
We sent the paperwork into the DMV last week, I hope to hear from them soon as to whether they approved the medical clearance to tint the van windows which should help a lot with the sun coming in directly on him. If that doesn't work I'm going to conjure up a sheet that will block the sun out of his face.
We have his compression vest sent into the DME company. It's been nearly a week and I called this morning for an update to be told the orthopedist had been out of the office last week that he will be back in tomorrow. I AM REALLY hoping that he sent it in once they sent him the order to the Roanoke office last week the lady is suppose to call and let us know tomorrow.
Dacotah is doing great with pre-school. He's showing interest in the other kids and said his best friends name the other day when Ms. Monica asked him who the little boy was. I love sneaking in (the best you can with a room full of preschoolers who say "baby, your mommy is here". Most of the time he continues playing until he eventually sees me. The pictures and videos I get throughout the day definitely highlight the improvements he's making and I know we are on the right path with the preschool we have chosen.
We have PT with Pat today and then we get to dress up and go to daddy's Christmas party at work. I'm hoping the down time between now and then will help and Dacotah will be more calm. I'm hesitant to take him into a crowd of people because you see him withdraw when they start talking to him. Maybe..... we will eventually get him a shirt that says My name is Dacotah I am 2 thanks for asking.. lol. In the meantime we will continue taking one step at a time.
Monday, December 5, 2016
Good changes are happening
Changes are happening every day at our house. Dacotah had is dental surgery at UVA in Charlottesville. He also had a meeting with the feeding and speech specialist during our visit. We got her report back in the mail yesterday and mommy's concerns were confirmed. She said Dacotah's speech was 66-75% delayed for his age. He is talking on an 18-21 month instead of a 33-36 month level, but she is pleased with the progress that he is making. As we have said all along, slow and steady, one step at a time. She also confirmed his Autistic Disorder through her office evaluation, to what extent it will affect his life, we don't know, we just know for the time being it causes the speech to be delayed and a skip in his "normal" routine without prepping and be a cause for concern.
OT is excited to see the changes he is making. We found if we take him to Wal-Mart for example and we strap him into the buggy tight he does good. If he's not strapped in, or is allowed to walk with his backpack, he end up in a meltdown. So for now we will continue to strap him down and figure out the next stage once he outgrows the buggy. I do not look forward to that day.
PT measured him for a compression vest, that should help with his hypotonia and anxiety levels. We are working with his core and trying to get it built up. It's slow and steady but there is hope. There is a doctor in JC who is willing to try a trial on Dacotah to see if it will help with his low muscle tone, which adversely affects his speech. We should know what benefits he gains from it by the time he turns three. Please pray that it works, there is a study that was published that showed kids with his genetic disorder showed remarkable improvement, but it was given before they turned a year old. There is not any research to prove it to be a definite benefit for Dacotah, but I'm praying that it will. For privacy reasons we will leave it at that, I will update the results as we see them.
For the car issue, we have submitted a DMV waiver for tinted van windows that will help block the sun from coming into the van when we are driving. We have found if we put our hands up and block the sunlight he's not screaming bloody murder down the road. I'm hoping the tinted windows will make traveling with him a life changer as well.
I started making him a communication board. I was very hesitant at first because I didn't want it to delay him further. After talking to multiple therapist we are using it as a brief tool, until he can say the words. Right now his word count without Echoing is roughly 20-30 words. To put this into perspective he should be saying 200+ words with meaning. He can say a lot, but he repeats words that you say. Words that he can't say he makes a spit sounding s..... :( He can say stuck but was sssssssssssss for truck. So I'm hoping by seeing the words and by us saying the words to him, he can understand them better.
Sleeping:...... This is one I am super thankful for, still going to sleep without and medications to assist. However, he REFUSES to take a nap, or go to bed unless mommy is home. If I get him to sleep he takes a full nap, and sleeps from 8:30ish-6ish in the morning ( thanks to the time change). I'll take it!!!!!!!!!!!!!!
OT is excited to see the changes he is making. We found if we take him to Wal-Mart for example and we strap him into the buggy tight he does good. If he's not strapped in, or is allowed to walk with his backpack, he end up in a meltdown. So for now we will continue to strap him down and figure out the next stage once he outgrows the buggy. I do not look forward to that day.
PT measured him for a compression vest, that should help with his hypotonia and anxiety levels. We are working with his core and trying to get it built up. It's slow and steady but there is hope. There is a doctor in JC who is willing to try a trial on Dacotah to see if it will help with his low muscle tone, which adversely affects his speech. We should know what benefits he gains from it by the time he turns three. Please pray that it works, there is a study that was published that showed kids with his genetic disorder showed remarkable improvement, but it was given before they turned a year old. There is not any research to prove it to be a definite benefit for Dacotah, but I'm praying that it will. For privacy reasons we will leave it at that, I will update the results as we see them.
For the car issue, we have submitted a DMV waiver for tinted van windows that will help block the sun from coming into the van when we are driving. We have found if we put our hands up and block the sunlight he's not screaming bloody murder down the road. I'm hoping the tinted windows will make traveling with him a life changer as well.
I started making him a communication board. I was very hesitant at first because I didn't want it to delay him further. After talking to multiple therapist we are using it as a brief tool, until he can say the words. Right now his word count without Echoing is roughly 20-30 words. To put this into perspective he should be saying 200+ words with meaning. He can say a lot, but he repeats words that you say. Words that he can't say he makes a spit sounding s..... :( He can say stuck but was sssssssssssss for truck. So I'm hoping by seeing the words and by us saying the words to him, he can understand them better.
Sleeping:...... This is one I am super thankful for, still going to sleep without and medications to assist. However, he REFUSES to take a nap, or go to bed unless mommy is home. If I get him to sleep he takes a full nap, and sleeps from 8:30ish-6ish in the morning ( thanks to the time change). I'll take it!!!!!!!!!!!!!!
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