8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: August 2011

Wednesday, August 31, 2011

Child Number 2 in Foot Braces

Steven has always had very high muscle tone due to being without oxygen at birth, which is why we've been doing physical therapy and why he's had such difficulty meeting his developmental milestones.  When he began standing he stood on his toes a lot.  Some days he does better than others.  Both physical therapists have discussed numerous times as to whether we should get braces for his feet or not.  Then about six weeks ago, his therapist at the hospital decided it was time, measured, called the developmental pediatrician to get her approval, and ordered them.  For some reason, it took about six weeks to actually receive the braces, and even though he has gone through a growth spurt, we're going to use them until the therapist can get a bigger size from the company and we'll then send these back.  She doesn't want him to be without them since it's taken so long to get them.

Steven is not too keen on the braces being put on, but once they are on he does really well with them.  I had to go buy him some new shoes that the braces would fit in.  I ended up going to Payless and getting two pairs for $21 since it was buy one, get one 50% off and I also had an additional 20% off coupon - BONUS!!!

We will double the time that Steven wears his braces every day for the next couple of days and then he should be able to go as much as we need him to when he's on his feet if he has a high tone day and is on his toes a lot.

Here's some pictures of our sweet little guy with his new braces:

New braces!

The braces up close!

Tuesday, August 30, 2011

Speech Evaluation and Final Worker/Child Visit!

Steven has been receiving early intervention services through Rainbows since he was two months old due to his traumatic birth.  We were first assigned a wonderful early childhood intervention teacher whom worked really well with us and we kept a pretty consistent scheduled.  We also saw a physical therapist a couple of times a week, but earlier this year, Steven's developmental pediatrician wanted him receiving weekly physical therapy that Rainbows was unable to provide due to their staffing and budget issues.  Because of Steven's doctor, we began doing weekly physical therapy at the hospital, while continuing to see the physical therapist from Rainbows in the home twice a month.

When we began transitioning Steven to table food, he had a really bad aversion to textures.  So the early childhood teacher had a couple of different speech therapists come with her to try and help us with that issue.  After a couple of months, we learned that Rainbows was having more layoffs and they were moving staff around to different areas, so we would be losing our early childhood intervention teacher and due to the fact that Steven was still having so much difficulty transitioning to table food and was not talking, they made our primary contact a speech therapist.  I had worked with this therapist before with one of our other foster kiddos, so we were familiar with each other.

Due to the limited number of days that the therapists and teachers can work in a given year and then the week we were on vacation, we went almost two months without seeing the speech therapist.  When I took Steven to his 18-month well child check, I expressed my concern to his pediatrician about how he was still not talking, still having some difficulty with table foods and the fact that we weren't receiving consistent services through Rainbows.  I told her that Steven was finally on our insurance since the adoption process was finally moving forward and I wanted him in weekly speech therapy.  She agreed and set up the evaluation.

As I had gone through so many times before, we sat down at the evaluation and went through the developmental checklists to see exactly where Steven's developmental stood.  In all areas he has met at least one of the developmental skills in the 12 to 15 month and 15 to 18 month area.  In most areas he had solidly met the 9-12 month skills.  However, in one area he had only met every single developmental skill in the 6 to 9 month area.  So within the next couple of weeks we will be adding weekly speech therapy to our routine.  When we go tomorrow for his physical therapy appointment, I'll be trying to arrange it so that we can do both appointments on the same day, to avoid having to make two trips to the hospital weekly.

Yesterday we had our LAST worker/child visit required by the State for children in state's custody.  I also got word from our attorney's secretary that the Decree of Adoption and Adoption Record are complete and ready to go for September 8th when we have our adoption hearing scheduled!!!!  Nine more days and it will be official!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wednesday, August 24, 2011

Neurologist Appointment

This morning Caleb had a regularly scheduled neurologist appointment.  Caleb always has difficulty at doctor's appointments, unfortunately.  We left the house at 8:15 and arrived at the doctor's office.  I knew we were in trouble as soon as we got out of the van and he said, "Not here again!"  I told him before we left where we were going, but I guess it didn't click until we arrived at the office.  (I really need to start taking pictures of everything and making him a PECS book!  Another thing to add to lengthy to do list!!!!)

We walked in and I checked him in and went through his medication sheet, just as always.  While we waited to go to the exam room, Caleb and Steven played with the train table.   We went to the exam room and I took Caleb's shoes and braces off and he did very well getting he weight and height checked.  Then they wanted to get a measurement on his head, which they had never done before.  He didn't like that and at that point things started going down hill.

The doctor came in shortly after that and I was able to redirect him fairly well and he accomplished some tasks that the doctor wanted him to.  The doctor then received a phone call from another doctor and had to take it.  I understand that and I wasn't upset at all.  I know that this doctor gives as much time as necessary to all of his patients.  There have been numerous times when we have had emergencies that he has had to take care of for us to the delay of his other patients.

I had mentioned to him about Caleb's short-term memory issues and his hand tremor.  He didn't really seem too concerned about either of them.  In fact, the only comment he made about the short-term memory issue is that we needed to take pictures so that he could remember.

After he came back from the phone call is when things started to go downhill very quickly!  The doctor wanted Caleb to read a story from a Highlights magazine.  Caleb has such a heightened sense of smell and cannot stand the smell and would not look at the magazine.  The doctor read the story and Caleb answered a couple of the questions, but didn't remember the answer to the other two.

After that the doctor wanted Caleb to do a math problem.  He didn't like the way that the doctor wrote the first number and crossed it out.  He then got very upset about the fact that he crossed out the first number.  We tried to get him to write a new number and he was too upset.  I wrote the equation over and he completed it.  Then the doctor asked him to write the word "dog."  At first, he refused to do it.  I told him he would not get his snack on the way to school, which caused him to be more upset and he started hitting and kicking.  UGGGHHH!!!!!  The doctor wanted to look at his eyes.  Caleb's indecisiveness took over.  He said he'd write the word, then he wouldn't and I felt like I was watching a ping pong match!  The doctor wondered out loud if we needed to consider another medication to help with his OCD issues.  We went round and round and finally we got him to write the word "dog."  He wrote "g" and then "o" and then "d,." so that when you looked at the word, it was "dog," just started at the last letter.  You could see that he was really struggling in his mind to determine how to write "d."  It broke my heart!!!  Just another way that his skills have regressed!  He could write his letters very well without having to think about it when he was in preschool
He was still very upset that he wasn't going to get a snack and we still needed to get his eyes looked at.  I ended up having to put Steven down, who at this point was getting very antsy as we'd been at the doctor's office for over an hour and he was ready to go.  So we had Steven screaming and Caleb trying to hit and kick the doctor and screaming.  I ended up having to put Caleb in a restraint and hold his head so that we could get his eyes looked at!  UGGGHHHHHH!!!!!

I was given material regarding the new medication the doctor is considering, but before doing anything he wants to talk to Caleb's psychiatrist.

We finally left and headed to school!  Then this afternoon we had Steven's speech evaluation.  That's for another post!!!

Tuesday, August 23, 2011

Neurologist Appointment Tomorrow

Tomorrow I take Caleb for his neurologist follow-up.  We have been seeing his neurologist every three to four months for the past three years!  I will be mentioning the issues with Caleb's short-term memory and the tremor in his hand, which the school has also noticed.  Hopefully he'll have some ideas.

Wednesday, August 17, 2011

Physical Therapy Success!!!!

Steven haw been in weekly physical therapy since October of last year due to his developmental delays related to his traumatic birth.  We have also seen a physical therapist from our local early childhood intervention services at least once a month, sometimes twice a month.  We started the weekly therapy because Steven's developmental pediatrician wanted much more consistent therapy that we were not getting with the in-home early childhood intervention service provider, which was having some serious financial issues.

Steven didn't crawl until he was 11 months old.  Now, at 18.5 months he has finally taken steps!!!!  We are so excited!!!  I really hope he is really walking well when we go to court on September 8th to finalize his adoption!!!!

It was actually relatively simple that he started standing and walking today.  While we were at therapy this morning, his therapist had a student working with her.  The therapist let the student take the lead this morning due to an issue with her back.  She had some toys and due to Steven's lack of confidence in standing and how he has to be touching something, the therapist and student talked about whether he held a toy in both hands if that would help.  So they gave it a shot.  The student put toys in each of his hands and held on to them as well.  Then when she felt that Steven was steady on his feet, she'd let go and see if he would stand.  On three different occasions Steven would stand for about three seconds.

Tonight at home when I tried this he actually stood one time about 10 seconds.  Another time he took two steps.  The third time, he stood after I got him steadied on his feet and then took off for about 7 steps.  


After about 7 steps!  Notice the maracas in his hands.  These were his comfort items!!!!

So proud of himself!!!!
Tony came upstairs and we tried again and Steven walked to Daddy!!  Tony turned him around and he walked back to me!  Way to go Steven!!!!!!!!!!!!!  We are so proud of you!!!!!!!

Monday, August 15, 2011

First Day of School

This morning was the first day of school year for Caleb and Cassidy.  They are starting 4th and 3rd grades.  It's hard to believe that they are old enough to be in 4th and 3rd grades.

Here are their pictures:

1st Day of School - 4th Grade
1st Day of School - 2nd Grade

First Day of School - 3rd Grade
First Day of School - 1st Grade


They are going up way too fast!!!!

Saturday, August 13, 2011

Short Term Memory Loss

When we received Caleb's Childhood Disintegrative Disorder diagnosis in January of 2010, we had numerous questions.  The most important of which was, "What caused this?"  "How far is he going to regress?"  Well, no one can really give us answers to those questions.  There is not a lot of information regarding Childhood Disintegrative Disorder.

When I took Caleb to the pediatric eye specialist earlier this month, I had taken a copy of the Neuropsych evaluation so that he could review it and he asked me, "Is this on the spectrum?"  I told him yes, that it was a very rare form.  He said that in the 12 years he'd been practicing, he had never heard of it.  Great!  The good news and not so good news was, he didn't see anything in Caleb's eye exam that he would think would be an indication of the reason this has developed.

Now, though, over this summer, a much bigger question has arisen.  "Why is Caleb having so many short term memory losses?"  Something could just happen and you ask Caleb about it and he truly does not remember.

Earlier today I was trying to lie down and rest as I wasn't feeling very well and Caleb came in in just his underwear.  I asked him wear his shorts were and he said he didn't know.   I told him he needed to go to his room and put some shorts on.  He came in a few minutes later and was still in his underwear.   I told him again he needed to put shorts on.  That has just moved up to the top of the list of our questions!

Unfortunately, we don't go back to the geneticist until October 17th.  I will bring this up to Caleb's neurologist when we go in a couple of weeks.  I'm also going to try to talk to his developmental pediatrician when I take Steven for his appointment in October and see if she wants to see him again.  We were going to make that determination after we had seen the geneticist, but that's still ongoing and we're not sure what he's going to recommend when we go back. So many questions and so few answers!!!!

Tony and I have talked numerous times to see if we should contact Mayo Clinic and see if they might have any insight.  I think it may be time to head down that road!!!

Friday, August 12, 2011

Two More Days of Summer Vacation

Last night was Meet Your Teacher night at school.  We took all the kids school supplies and met their teachers.  We already knew Cassidy's teacher, as she was Caleb's homeroom teacher last year.  Although he didn't spend much time in her class, just for social studies and science and special activities.  All of his other academics are taught by his special education teacher, in the FAA class.

We met Caleb's homeroom teacher, but just like last year, he will only be with her during social studies and science and special activities.

Cassidy has a new IR teacher, where she will go for an hour a day to complete work that she was not able to finish during class.  Her IR teacher will also administer her modified state testing this year as per her IEP.

Caleb, over the last couple of days, has been asking me if I would take him to school on Monday to show him where his class was.  I kept reminding him that we'd be going to the school Thursday night.  I also reminded him that Mrs. K. would be at school on Monday and would help him.  Mrs. K. is a wonderful para that has worked with Caleb since his moved to that class in February of second grade.

I thought Caleb was excited about school until tonight.  Tonight he said, "I'm not going to school on Monday!"  Um, that's not an option, buddy!  I did find out today that his bus will come about 20 minutes after Cassidy's, so at least I won't have to be getting them both out the door at the same time.  That was a huge challenge some days last year!  

So, Saturday and Sunday are the last days of summer vacation for 2010.  I'm ready for a regular routine!

Tuesday, August 9, 2011

Six More Days of Summer Vacation

When you have special needs children, structure is very, VERY important!  Vacations are usually very difficult at our house because of the lack of structure that usually occurs.  Trying to keep the kids occupied and from totally aggravating each other just wears me out!

Well, I have made it through this summer and only have six more days to make it through.  It has been quite helpful having 20 hours of extra help with Caleb last week and this week in addition to our regular amount of 54 hours a month of supportive home care.  We were able to get a high schooler from our church, who has helped her mom who is a speech therapist and also volunteered in our church's special needs Sunday school class.  Caleb really took to her and doesn't want her to leave when her four hours are done each day.  Friday is going to be a sad day for Caleb, because I don't know if this worker will be able to work any hours during the school year due to her schedule and softball commitments.

I am really ready for school to start, though.  I have done so much running this year getting the kids to and from their camps, that I have not had a lot of time to rest this summer and Steven's schedule has been so out of whack all summer.  I'm looking forward to getting Steven back on a real good schedule and having some time to get some things done!

Thursday is Meet Your Teacher Night.  The only new teacher we are going to meet is Caleb's homeroom teacher, since he will have the same special ed teacher that he had for part of second and all of third grade.  It's our understanding that the plan is that he will have the same teacher for fifth grade as well.

Cassidy will have the teacher that was Caleb's homeroom teacher for third grade.  Although we know her and she knows us, we don't know how her class if run, since Caleb was only in her room for early morning activities (like choosing lunch) and science and social studies, since all of his other academics was in his special education class.  So it'll be interesting to see how Cassidy does with her.

I'm praying that the kids have good school years!

Monday, August 8, 2011

2011 Camp Barnabas and Vacation - SUCCESS!!! - Part 4

Here is the fourth and final post about our vacation.

So Friday morning arrived and we got ready to go to Camp Barnabas and pick up the kids.  The gates opened at 10 and then we were to meet the kids at their cabins, get their stuff to the cars and then go to the building where they ate their meals and had their parties for a final ceremony.

After we got parked we made a stop at the Shirt Shack and got some t-shirts as well as a video of the week.

We first went to Caleb's cabin.  When we got there he was outside and he looked very upset, not at all happy to see us.  To say I was a little disappointed would be an understatement!  I would have thought he would have been happy to see us.  Robbie, Caleb's counselor, told us that his friend Ryan had just left with his parents.  Caleb was very sad to see his friend Ryan leave.  He did come over and give me a hug and seemed to do better.

We then went to Cassidy's cabin and she was very excited to see us.  While Tony took her bags to the car, we walked to the building where we were to meet and there was so many people there!  All the kids were happy and saying goodbyes to counselors and the friends they'd made.  There were a number of counselors that came up and specifically stopped to give Caleb hugs and tell him they hoped to see him next year.

Waiting for the program.

The place is filling up!

One of the many CIA's that came and told Caleb good-bye.

Best seat in the house!

Robbie, Caleb's wonderful CIA, and Caleb at the program.

Caleb and his buddy Ryan!  I absolutely LOVE this picture!

Singing songs!

Karly, Cassidy's CIA and Cassidy
Once the program was over we left and headed back to our condo.  We stopped at got lunch and McDonalds and then finished our trip.  We relaxed at the condo, while I did laundry and then for dinner we drove to Berryville.  Tony had seen a Chinese "Super Buffet" when we had driven there earlier in the week and said we'd give that a try.  Chinese is Caleb's favorite and because it's a buffet, he usually does very well behavior wise.

When we arrived at the buffet and we walked in we saw the buffet.  All I have to say, it's not a super buffet by Wichita standards, but it would work.  We sat down and Tony went to help Caleb get his food.  To our surprise, they did not have sweet and sour chicken on their buffet.  What Chinese restaurant does not have sweet and sour chicken?!?!?!?!  Despite the fact that the selection was not the greatest, Caleb did really, really well!

After we finished we headed back to our condo, continued packing up and got the kids ready for bed.

Saturday morning we woke up and this is what I saw outside the bedroom window:

The geese right off of our deck!
 They obviously had an idea that it was Saturday because we had not seen geese outside of our unit all week!

This one was a little aggressive towards the others!

We had some extra sandwich rolls left over, so we gave them some breakfast!  They all loved it!

Breakfast time!

We headed home after getting the van packed and dropping off the keys to the office.

All in all, I'd have to say that this was a very successful and relaxing vacation!

Friday, August 5, 2011

I really need to stop saying, "Everything's going well."

Yesterday afternoon I had to take Caleb for his scheduled med check appointment, which we generally do every two months.  We went in Dr. Jenkins, who has been seeing Caleb regularly for over 6 years and she has been seeing Cassidy for four years, asked how things are going.  And I said, "Everything's going well with him."  So she said, "You don't want to change a thing."  I told her that no we didn't want to change anything.  That adding back in the 5mg of Abilify that we did the first part of June was a huge help and things were going well.

In fact, things have been going so well since we came back from camp, that Caleb can spend time in the basement by himself.  (We really should have sent him to sleep-away camp much sooner!!!)  Caleb's anxiety has usually been so bad that there have been numerous times that he couldn't even spend time in his bedroom alone because he was "scared."

However, today he's had more difficulty with not listening and being more disrespectful and a little less easily redirecatble than he has been in the last couple of months since we added back the Abilify.  Now, I know things are not always going to be perfect and I also know that the behavior today is not because I told his doctor, "Everything's going well."  But, gosh darn, it seems like every time I say that the next day is much more difficult!

I so appreciate his doctor in that she respects how I feel things are going and listens to me and doesn't have her own agenda when it comes to the kids' medications.  I also know that if I call her and tell her that things have gotten bad, she is willing to do some tweaking to help us prior to our next appointment so that we're not in constant crisis mode waiting for our next appointment.

On a good note, though, our attorney has the signed Adoption Petition for our Little Guy and was going to get it filed today so that there would be no problems keeping our finalization date of September 8th!!!!!!!!!

Tuesday, August 2, 2011

2011 Camp Barnabas and Vacation - SUCCESS!!! - Part 3

Here's the third post about our vacation.

Wednesday we hung around our condo in the morning.  I had called and checked our messages and had a message the day before from our vet about Bailey, our 12-year old dog, who was at the kennel and was having some lab work done.  She mentioned there was a problem with her CBC and was going to redo the tests.  I called that morning and left a message and we didn't want to be out and about and not have signal in case the vet called back.  She eventually called back and said there must have been a problem with the sample because they redid the test and the numbers were fine.  Although there was some concern about her urine sample as well, but they were going to recheck that as well.

After the call, we ended up getting ready and head out to the Onyx Cave.  We've always wanted to do a cave tour whenever we've gone to Branson, but weren't sure how Caleb would do, so it was a perfect time to go while he was at camp.    It was interesting.  I was expecting it to be much cooler in the cave than it actually was.  We weren't able to take the stroller in, so it was difficult trying to carry Steven throughout the cave.

On Thursday we got up and went and took a ride on the Eureka Springs and North Arkansas Railway.  It was a nice ride - albeit very warm!

Waiting for the trip!

Getting ready to hook up the engine.

After the train ride, we grabbed lunch and then ran over to the Passion Play Center.  I really wanted to do the Living Bible Tour, but it was sooooo hot!  Tony said we'd try it, since we didnt' have plans to go back.  First, we drove to see the Christ of the Ozark statute.

Absolutely amazing!

The view was spectacular!

Near the statute, they have an actual section from the Berlin Wall.

Then we went and got our tickets to the Living Bible Tour.  We made it about halfway through the program and Steven and I were not handling the heat well, so we ended up leaving.  I hated to leave, but knew that our health was much more important.

Woman at the Well!

Part 4 and the final post still to come!