Therapy Days

So, Keelie had physical therapy and speech therapy yesterday. Her speech therapy (food swallowing) was first then we had physical therapy. The physical therapist needed to see her after speech therapy we were late getting done. It was about 12:45 so we went and ate lunch then waited to pick cayden up to take her to dance. Keelie had a good day in speech. The speech therapist wants us to work on open cup drinking and to not let her drink so much when she is eating. She believes she is filling up by drinking. And maybe she is, she has always drank a lot. So maybe that was her way to avoid foods. We also are going to try introduce some of the same foods to her to try to give her a chance to get used to it or like it. I may be introducing too many new foods to her. In her physical therapy session she had a great day. She did a lot and she worked hard. I was so proud of her. She even jumped on the trampoline. For those of you who don't know, Keelie can't jump so this was huge. Keelie got AIR.....lol. She still couldn't do it on the ground but one step at the time is good enough for me.

Today Keelie had occupational therapy and speech therapy. She had OT first. She did pretty good. We took anyhow and tell. Keelie has been playing that game prediction which requires some pincher activity. I had to show the OT what she could do. She doesn't always use her pinchers but what she does is good. Any progress better than none. She didn't do everything then therapist wanted her to do but she did good. She seemed a little preoccupied today. I told the therapist that I wanted her to try to take Keelie by herself. I think she will do better without me. She seems too concerned with me being right beside her and if I weren't in there then she would focus more on the therapist instead of me. Her speech therapy went really well. She did stay in there by herself because I had to change and feed ryland. She did really good. We met a friend for lunch then we just waited on cayden to get out of school. We will have speech therapy again tomorrow then we are done for the week. Whew!!!!!

We are getting ready for Cayden's 5th birthday. The party is on Sunday. She is so excited. It will be fun and it's fun to see her so excited.

Thanks to all who follow the blog and pray for us. We appreciate you all.

Busy, Busy

Monday was a holiday so the kids and I got up and went to meet Josh for breakfast.  He had to work a little while before he left for Chattanooga.  After naptime, we packed a few things and went to West Point to stay at my Mom's house.  I just don't like staying by myself.  So call me a wimp.  Ha ha.....  One day maybe I will grow up.  As I put Keelie to bed my Dad mentioned that she felt hot.  Just GREAT (sarcastically).  Keelie had a fever of 101.8.  I gave her some ibuprofen and put her to bed hoping she didn't get worse through the night.  Tuesday morning she woke up with a fever of 101.4.  I guess this means no physical therapy or speech therapy.  UGH!!!!  I hate for her to miss.  I decided to take her to the doctor.  The doctor didn't see anything specific except that she had a slight ear infection.  The doctor didn't think it was bad enough to be put on antibiotics but if it got worse she could start some.  The doctor told me that Keelie could just tell me if her ear was bothering her.  OK......that's a problem.  I explained to the doctor that Keelie could not communicate to me that her ear was hurting.  The only sign I would have is that she may pull on it, but I do not know how she would let me know that it was worse.  And, Keelie has the low sensory so her pain tolerance is really high.  So with that being said the doctor decided we should just go ahead and start the antibiotics.  On the way home she fell asleep in the car.  I put her down when I got home and she slept over 2 hours.  We picked Cayden up and took her to dance.  Keelie ate some chicken nuggets while we waited since she slept through lunch.  I think she's feeling a little better even though she didn't act like she felt real bad.  I could just tell she had a fever because she was real tired.  After dance we went back to my Mom's house.
Keelie woke up in a great mood today.  She had no fever and seemed to be feeling great.  I called the OT and she said to come on at 9:00 for her occupational therapy session.  She was very weak on some of the fine motor skills she tested last week.  Today we worked on crossing midline and using a pincer grasp instead of raking to grab.  She had a good session.  She just has a ways to go.  After OT we had speech therapy.  It went well..  She most definitely has a ways to go.  The speech therapist thinks Keelie will be in speech therapy til 3rd or 4th grade.  WHEW....that's a long time.  But whatever it takes we will do it.  We have speech therapy for the last time of the week Friday morning at 8:30 am.  I also talked to the physical therapist today.  We will be going to Tupelo soon to get Keelie's braces for her ankles.  After therapy we went home, ate lunch and took a nap.  We went to get Cayden then back to West Point.  Last night there.  Thankfully Daddy comes home tomorrow.  WooHoo...

I will try to not be so long in updating the blog.  It seems to be too long when I wait.  Thanks to all of you who keep up with Keelie.

Back to Reality????

Yesterday was an extremely busy day.  I had to drop Cayden off at school then Keelie, Ryland and I went to Wendy's to eat a little breakfast.  We then had a few errands to run before I had to take Keelie to physical therapy.  We got to PT around 10:15 am and the staff was anxious to hear about our trip.  After they were all informed they were excited to get to work on Keelie.  Thank goodness.  The occupational therapist came in and talked with us and we are supposed to see her on Friday for an evaluation.  Then the physical therapist worked with us a little.  Keelie was just a little shy since she has not been in several weeks.  The PT also informed me that the SMO braces did not get through before December 31st.  UGH!!!!!  That means we will have to apply that towards our deductible.  That's OK but it sure would have been nice to have them paid for since Keelie was at 100%.  Oh well.  We still have to get them for her so we will just have to deal with it.  After PT we went to the speech pathologist's room.  We talked about the trip and had a lot to tell her about how Keelie is doing and what to expect from now til August.  She was so glad to have Keelie's reports and the article they wrote about Keelie's syndrome.  All three are very helpful because it is hard for me to remember everything myself.  I have referred to that article and reports several times.  After speech we met my Mom for lunch at Pepper's then we rushed home to get Cayden's dance clothes and headed back out to pick her up.  While Cayden was at dance I had a few more errands to run then I picked her up at 3:30.  Lastly, I had to return a pair of pants that were too big for Cayden then I finally got to go home.  It was a long day but productive day.

Right now Keelie will have physical therapy and speech therapy on Tuesdays, then speech again on Wednesdays and Occupational and speech on Fridays (maybe).  The Friday schedule may possibly change.  Not sure yet.  So my "stay at home Mom" status just got changed to "on the road Mom".  Ha ha.  BUT......that's OK.  I will do whatever it takes to take care of Keelie and her needs.  We are going to be busy but I couldn't be more thankful that we are able to get speech 3 times a week, OT and PT once a week.  Thanks to all of you who were helping us pray and thanks to all of you who pray for Keelie on a daily basis.  The next challenge will be to try to teach Keelie speech production.  And to remember we are not to teach her new consonants. 

Today's speech therapy went great.  We have a new speech pathologist so today we just got to know each other a little and let Keelie be around her with me in the room.  Next time will most likely be just the two of them.  Keelie did good.  She got a little tired towards the end so she got a little rowdy.  But overall she did good and the speech pathologist is excited and anxious to work with Keelie.

Thanks again for all the continued prayers and for following the blog.  Hope you all have a good day.

The Reports

I talked to Dr. Mervis this morning.  She called me to let me know she and Dr. Velleman (speech person) were finished with Keelie's reports and she had emailed them to me.  She wanted me to print them off and have them ready for the speech therapist and physical therapist so they can be aware of what is going on with Keelie.  The reports are obviously more informative than me just telling them about Keelie and it helps me to remember everything they say.  LOL....

I already mentioned the scores Keelie had on the Mullen Scales.  Just thought I would mention a few things I learned about Keelie by reading the report. 

One of Keelie's low scores was on the fine motor scale.  She was able to stack 8 one inch cubes to imitate a train the examiner made and she could draw a line with a crayon.  She was not able to copy a vertical or horizontal line.  The examiner demonstrated unscrewing and rescrewing a plastic nut and bolt.  Keelie was able to unscrew the nut but could not put it back on the bolt and rescrew it.  When they gave Keelie small beads to string she was able to string one bead but then could not coordinate her hands to string the other two.

Another one Keelie scored low in was on expressive language.  Keelie was able to combine a word and a gesture and to name three of six common objects that were shown to her.  Keelie did not label any of the black and white drawings of common objects or produce any two word utterances.

Dr. Mervis assured us that Keelie's pattern of strengths and weaknesses is consistent with the pattern that is commonly found for children with 7q11.23 duplication syndrome.  She also noted that Keelie's nonverbal reasoning skills and her receptive language skills are quite good and are stonger than her fine motor skills and especially her expressive language skills.  She also noted that Keelie would benefit from occupational therapy to strengthen her hands and fingers and to address more advanced fine motor skills.  Dr. Mervis says Keelie would benefit from intensive speech therapy due to the fact that Keelie is very delayed relative to her receptive language and her speech is very delayed relative to her expressive vocabulary.

Dr. Velleman's report was a little more intense since speech is Keelie's main problem.  Dr. Velleman noted that many of Keelie's mispronunciations do not fit neatly into any substitution pattern.  She noted that reduplication and harmony should not be so pervasive at Keelie's age.  They appear to be having a significant impact on her intelligibility.  atypical substitutions add to the difficulty for an adult who is trying to understand her.  Vowel deviations and inconsistency of production of the same word on different occasions also seriously detract from her ability to communicate.  Keelie's relatively good consonant and vowel repertoires are very deceptive.  she produces quite a few different consonants and vowels, but they are far too rarely produced in the appropriate words or word positions for effective communication to occur.  These are the patterns that are suggestive of Childhood Apraxia of Speech.  But because of Keelie's age, the fact that she is not combining words yet, they are diagnosing her with "symptoms of CAS".

Dr. Velleman recommends that Keelie receive intensive, frequent speech language therapy five half hour one on one sessions per week.  She also emphasized the it is very important to note that a larger vocabulary and word combinations are not appropriate goals for Keelie at this point.  If Keelie's vocabulary or her mean length of utterance grow faster than her motor speech control, she will become more and more unintelligible and more and more frustrated.  Speech production must be her absolute priority at this time.

Dr. Velleman also emphasized that teaching Keelie new consonants that are not yet in her repertoire should not be a goal right now because she does not have adequate motor control of the consonants that are already in her repertoire. 

So today I have been on the phone most of the day trying to schedule more speech therapy and schedule occupational therapy for Keelie.  I talked with several people and hopefully we are going to get more sessions in and are going to get in to occupational therapy as well.  My request for all of you who read this is to pray that we get these therapy sessions that are needed.  Both doctors want us to be aggressive with Keelie's therapy and I am hoping we are going to be able to get both.  My wish is for Keelie to be in speech therapy three times a week and occupational and physical therapy once a week.  I'm just not sure if it is going to work out but I sure hope it does.  Thanks for all of you who follow the blog and a special thanks for all the continued prayers.

Home Sweet Home

We finally made it home around 7:30 pm Friday night.  What a long drive with 3 kids.  They did really well considering how long we were in the car.  We drove through Chick Fil A for breakfast and stopped in Nashville for lunch then picked up Subway in West Point for supper.  We did have to stop a couple of times for gas and a potty break.

The doctors tested Keelie with the Mullen Scales of Early Learning.  This test can be used to identify a child's strengths and weaknesses and it assesses development.  This test uses five scales to provide a complete picture of cognitive and motor ability.  Keelie scored a 100 on understanding and matching.  They showed her a picture then mixed it with two other pictures and she picked out the one they showed her first.  She scored a 70 on expressive which is a mild delay.  And she scored an 86 on fine motor which is also a mild delay.  They said she definitely would benefit from being in Occupational Therapy.

The speech doctor wants us to look at the Childhood of Apraxia of Speech Association of North America.  http://www.apraxia-kids.org/  She also wants us to buy Keelie a gummy yummy for her to chew on along with her chew tubes and z-vibe.  She did say to work hard with Keelie to try to keep certain things out of her mouth and to try to explain to her that hands and other objects don't go in her mouth.  She said if she is persistent at putting her hands in her mouth then try to explain to her that only clean hands go in your mouth. The doctor says Keelie puts her hands or other objects in her mouth because she is has low oral sensory.  This means she is looking for different feelings in her mouth because she doesn't feel like we do.  She does believe this will get better.

On a bad note, Keelie came home with a cold.  I'm not surprised with the different temperature changes we went through.  So we are back on Xopenex along with Pulmicort.  The Pulmicort is a preventative medication she is suppose to stay on all winter to prevent wheezing.  She is actually really good at the nebulizer.  She will turn it on and off herself and sit there like a big girl until it is done.  Hopefully, we got a head start and she won't end up as sick as she normally does.  This time last year was when she was in the hospital for 3 days for respiratory distress, flu, and tracheal bronchitis.  She doesn't seem too bad although she does have some congestion, but the drainage is just a little yellow. 

Here are a few pictures from our trip. 

This is a hat we bought Ryland at Bass Pro.  I told Josh that the little boy needed a hat.

This is Cayden's smile for "how much longer".  ha ha  I heard that quite a few times.

The girls loved seeing the rocket in Huntsville.  I couldn't resist stopping.

Keelie's sad face.  A new trick she has learned to get what she wants.  She has Daddy wrapped around her little finger.

A picture inside the Bass Pro Shop.  The kids loved this place.  Well the adults did to.  LOL

The Finale

What a day we had. We went in this morning to do the baby thinker test. Keelie's participation was not so good. She was distracted. Ryland on the other hand did great. He watched the pictures and did what they were expecting him to do. We were glad we could help them out. It took about an hour. We grabbed a bite to eat at the Hall of Fame Cafe of Louisville then went back to the hotel for a nap. We needed Keelie to be well rested.

We headed back to the university at 3:30. We had to wait just a little bit when we got there so the kids got just a little bit rowdy. Angela came to get Keelie and I and we went into a room to talk to her. The goal here was for Keelie to talk spontaneously and recognize objects without being asked to recognize it. It took her a while to warm up. She finally did some talking and the thing that got her were goldfish. She really perked up when she started eating the goldfish crackers. After this evaluation she went to the playroom with the speech therapist and another speech person. Josh and I were able to watch her play in an adjacent room because they always film these sessions. This one lasted about 40 minutes. Myra played with her and they listened to how she pronounced words and what she would call each item they played with.

The results are mostly good. We learned quite a bit about Keelie and her speech. Her speech is not a delay it is a disorder. She has a borderline diagnosis of childhood apraxia of speech but they won't determine that until she is 3. She does not have all the signs of it just some. Keelie will try to say something and it will come out totally wrong. She may not even know she is saying it wrong. Her brain is trying to say one thing and something else comes out of her mouth. they want us to work on simple sounds and try to get her to say baby instead of maymay. Sometimes she may say baybay and others maymay. This is called a reduplication. She needs to learn to distinguish between the sounds. We are going to have to try to get her say the specific word for that specific object. They do not want us teaching her new sounds. They say she has a good "s" but that could be bad. Since she has a good "s" the speech therapist sometimes think she may be advancing and not need therapy because it is a delay but that is not the case. Keelie has a speech disorder and she doesn't realize she's doing a good "s" sound. They said she has several syllables which is why she seems confused. She also needs speech therapy more than once a week. They also said that pressure situations aren't good for Keelie. People with this disorder don't speak well in public or in stressful situations. They dont want us to force her or bribe her or even punish her for not talking well. They fear she could get frustrated because she can't talk and they don't want that for Keelie. Right now she is socializing and trying to communicate so the goal is to try to keep her that way. Other kids with this disorder tend to shelter themselves due to the lack of communication.

I left her scores in the car so I will have to post them tomorrow. They scored her on a Mullen scale.

We also learned that Keelie does have some sensory problems. Sometimes Keelie doesn't feel pain. This is part of her disorder. And Keelie does have hypotonia, which we know. This is also part of the disorder. They suggest she be in physical and occupational therapy. They feel like the braces for her ankles are a great idea. Others kids with this disorder have braces.

Keelie will be in therapy for a while but her future looks really good. She could have a speech problem but she will be able to talk and people will be able to understand her. She will get stronger but may always be weak. She will have a 50 percent chance of passing it on to her children. Overall, though I kind of feel relieved that her future can be just like anybody else's.

We will return in August to see the geneticist and speech therapist again. This is all I can think of right now. We were there from 3:30-8:30. It's late and I'm tired. I will blog more tomorrow when I get my notes and when I get home. So it actually may be Saturday before I get to it. Long ride home. I will also post a few photos from our trip. Thanks again for being a part of our journey and for the prayers. Good night.

Fun day

Today was just a fun day. We slept in a little while then went to a place called All About Kids. It was great. It was a huge indoor playground. It had some inflatables, playground equipment and after we were there a little while they opened up the gymnastics floor. The girls jumped on the trampolines, jumped in then foam pit, went down big slides landing in the foam pit, and even dropped off of a swing in the foam pit. We ate lunch there then we went to Costco. We didn't stay there long. We then decided to go to the Bass Pro Shop in Clarksville, Indiana. We had a blast there. That place has 3 floors. We went on a hunting expedition, raced some NASCAR race cars, and shopped a little. The girls loved looking at all the fish. We even saw a pheasant. It was really great. We left there with intentions of going to Hard Rock Cafe but we couldn't find a parking spot close because it was in downtown Louisville. So we found an Outback and ate there. We had a good day.

Tomorrow we have to be at the university at 9:00. Keelie and Ryland will do the kid thinker test then we will go back to the hotel for lunch and a nap because Keelie then has her big evaluation with the speech therapist. I hope she is well rested and cooperative. She is always better in the morning than she is in the afternoon.

Oh....thanks to Allison for calling me today with my blood test results. They were normal. Now to find out about Josh's. If his are normal then we will not have to have cayden or ryland tested. Fingers crossed and prayers appreciated.

I look forward to giving you all some good information about Keelie tomorrow. We meet Dr. Mervis after the speech therapy session.

University of Louisville

Today we had to be there at 8:30. We left at 8:00 and good thing we did. The ramp we needed to take was closed so we had to detour. When we got there they immediately started. Josh and I went with Dr. Mervis and Keelie stayed with the staff. The first hour was Josh and I answering tons of questions about Keelie and her speech and behavior. We found out that the first diagnosis of a duplicate 7q11.23 was in 2004. There was an individual diagnosed with dup 7 who wasn't diagnosed until her son showed it. She was actually pictured as a child client in Hodson's and Paden's book on Targeting intelligible speech. So she was being studied for her speech not even knowing she had a dup 7. The nerves in Keelie's frontal lobe could also be a delay from the dup 7. She couldn't really say if the seizures were related to the dup 7 or not because only a few others had seizures.

this is an article from the research we are in at the University of Louisville. It has a lot of information in it.
http://louisville.edu/psychology/mervis/research/Velleman%20-%20%20Mervis%20ASHA%20Perspectives%20Dup7%202011.pdf

Dr. Mervis told us she could tell Keelie was intelligent and social. After the interview I went to a playroom with Keelie. We were filmed for 30 minutes. They were in a separate room and they had hidden cameras so Keelie didn't know anything was going on except she was playing with Momma. After the playtime we went back to talk to Dr. Mervis some more. She did inform us that of the 40 families they are studying most have successful jobs and college educations. She also told us that there were approximately 50 noted cases of dup 7. She said there could be more. They are just undiagnosed. The dup 7 was actually discovered by accident. A child was being tested due to his severe speech delay. Basically we just answered a ton of questions today. I went back alone at 2:00 for a Mom interview. It wasn't much. They were screening me to see if I had anxiety. Basically to see if I was handling Keelie's disorder alright. Thursday we see the speech therapist. We will first go in Thursday morning for a short evaluation where she will look at pictures. Ryland is also involved in this one as well. They just asked if he could since he is so young and we are here. So why not.

So for a little fun we did go swimming. My goodness why does my child want to swim when it's 28 degrees outside. Ha ha. But we went. It's bad because we have to walk across the parking lot to get there. It's in a workout center since we are on a campus. Then we went to the Old Spaghetti Factory. It was fun. Tomorrow should be a fun day then back to the university on Thursday. Good night all.

Kentucky Bound

 So yesterday we went to Smith Lake to spend the night then we were going to head to Kentucky bright and early Monday morning.  This was going to help our time traveling.  We would only travel a little over five hours from the lake instead of 8 hours if we had left from Starkville.

We left about 8:30, a little later than expected.  The trip really wasn't all that bad since we broke it up a little.  We stopped on the other side of  Nashville for lunch.  Keelie napped a little before lunch but after lunch she took a long nap.  We were almost there when all three woke up.  I drove from Nashville to Louisville.  It started snowing right out of Nashville and I pretty much drove in it the entire way.  It was very pretty.  Not the wet snow we see at home.  We got to Louisville around 4:00 pm EST.  We are staying on a seminary campus at the Legacy Hotel.  Very neat place.

We ate at this place called Mark's Feed Store, which is a barbeque place.  It was very good and Monday nights are free dessert nights.  We all had dessert.  Ha ha......

We have to be at the University at 8:30 so off to bed we go pretty soon.  Will post a few pictures of the trip and will keep you all updated on how Keelie does tomorrow.  Thanks all for your prayers and for following our journey.