Weeks 23 and 24

Conclusion of the MAPS program:

In my opinion the MAPS program did not work for Isabella. I spent the last six months doing the MAPS exercises twice a day, every single day, except when she was sick and was not able to do them. Prior to MAPS, Isabella's progress was slow and it continues to be slow. She has always made progress and continues to make progress, as I noted during the last few months; however, the rate at which she learns and the things she learns and does are not different from before.

I do believe that any type of multisensory therapy is good for our kids as it stimulates all the senses; however, MAPS is very expensive for type of therapy that any parent can do right at home to stimulate their child's sense of smell, sight, hearing, touch and taste. MAPS costs $5,000 for the first 6 months and $3,000 for every six month thereafter.

The goals I set up for Isabella where to walk independently, to be seizure free, to self feed, to speak in at least 3 word sentenses, to be more at her age level cognitively, etc. In the MAPS seminars I attented prior to joinining the program, the MAPS creator had stated that the longest she had ever treated a child was for 20 months. When I joined MAPS, they gave Isabella 26 months to achieve the goals I set up for her.

The seizure protocol never worked for Isabella, even though they continue to say it is 100% effective. The program did not work for Isabella and they continue to say it is 100% effective.

The reason I decided to try MAPS was because I had attended one of their seminars and then followed the progress of a little girl with Aicardi Syndrome who did the program for 6 months. I was in touch with the mother over the 6 months her daughter did MAPS. In those 6 months, the mother claims, her daughter went from crawling to walking, from saying a couple of words to saying over 20 words, she started to selfeed, etc, etc. After hearing of those results I decided this was something I should definetely try. I called that mother recently and told her that the MAPS program had not worked on Isabella and neither had the seizure protocol. The mother stated that she does not believe the seizure protocol worked either and she is not sure why MAPS worked on her daughter, she feels that maybe any kind of multisensorial stimulation would have worked for her. Despite all of the goals her daughter reached in the 6 months, she did not continue with the MAPS program.

In conclusion, this BLOG is intended to inform and to provide my opinion based on my personal experience with my daughter. I will never discourage any parent or person that would like to try anything new on their child, specially when it is something that can not do harm and possibly do some good. In our experience MAPS was not effective for Isabella.

Weeks 21 and 22

Isabella has been very vocal this weeks but no new sounds. She continues with the same pattern of speech. Her sounds are the same as six months ago. Only the vowels OH and AH.
I keep encouraging her to walk and she wants to do it more and more. I hold her two hands and she takes steps. She is wanting to walk more and more but her steps are still not even.
The therapist states that the more walking the better her steps will become. I agree.

Weeks 19 and 20

Isabella continues to refuse to do many of the MAPS exercises and I was told that since she had been sick and had had the Grand Mal seizure that her brain was focusing on recuperating and that she needed to rest. We took a week off of MAPS per the therapists instructions and the following week, they gave me very simple exercises and Isabella is tolerating them well. She still does not want to smell any scents that are brought to her face.
I have not noticed much progress but she continues to keep busy playing with her toys and her virus is gone.

Weeks 17 and 18

Isabella has been fighting a virus and due to fever she has had a few seizures that last less than a minute. I have done the MAPS seizure protocol everytime. On Feb 13 Isabella had a Grand Mal seizure that lasted 75 minutes and landed us in the E/R. The seizure was caused by a fever that got to 103 degress. I did the MAPS seizure protocol for at least 20 minutes while we were on our way to the E/R but the protocol did not work on Isabella. We were admitted to ICU and then to a regular room we spent 3 days in the hospital. She did not have any other seizures after the Grand Mal Seizure. (This is Isabellas 3rd Grand Mal seizure ever).
Isabella has not made much progress in the past two weeks. She actually is refusing to smell the scents and do some of the games that are part of the MAPS program. I am doing what she wants and not pressuring her into doing exercises she refuses.

Weeks 15 and 16

- She is trying to go from the coffee table to the couch on her own. She has succeeded twice. The space between the coffee table and the couch is very small as if I space them out more she will not try it.
- Her balance keeps improving. Her feet are more straight when she stands.
- She had 2 seizures on 1-24-06. They were about 30-60 seconds each.
- I have noticed that her eyes move better when tracking things or looking at things.
- She is more inquisitive and likes to explore more.
- She demands more attention.
- She goes to anyone, even strangers and kneels or stands holding onto their legs in order to be picked up.
- She is more loving and wants and gives more affection.

Weeks 13 and 14

-Again Isabella caught another cold and has been sick for 2 weeks. This time she is very sick and was given antibiotics. She has not been herself during this time and so she has been very laid back. We have had a hard time doing the MAPS exercises as she is not feeling well. We only do what she can tolerate.
- She has not had any seizures since 12-4-05.
- She has learned to activate another toy. The toy is one in which you push a big button on top and it spins and lights up and has music.
- We also have a little organ and she has been banging on the keys to make the sounds. I have the organ on top of these 2 steps that her daddy built for her and she goes up one step and plays with the organ.
- She is liking taking steps more while I assist her.
- Her balance seems to be improving even though she is still not standing without holding onto something.

Weeks 11 and 12

- She is standing more while holding onto objects or people. When we play with her on the floor she is trying to hold on to our body and stand by herself by letting go once she is standing. She has not succeeded in standing without holding.
- She is cruising a little more.
- She has been exploring the house much more. She goes to other rooms and goes underneath the chairs in the living room.
- She continues to eat better. I give her sweet baked potatoes, baked butternut squash and bananas and she loves it. She holds a piece in each hand and brings it to her mouth to self feed.
- She is also picking up the gerber veggie puffs much better and she also brings them to her mouth. A lot of times she does not do the princer grasp correctly so she sweeps the piece but still brings it to her mouth. Sometimes I have to assist her in putting the piece inside her mouth.

Weeks 9 and 10

- She has been trying to walk with the toy walker. She takes about 3-4 steps at a time with the walker. The walker is one of those cheap toy walkers that we have had for a long time.
- She continues to improve her cruising around the tables and furniture. She still has a lot of balance issues and she is careful so she does not go too fast but she is getting better at it.
- She is very active playing with her toys. She goes from thing to the next.
- She entertains herself a lot.
- She had two small seizures of about 30-40 seconds each on 12-4-05. She was just coming out of a cold. Isabella gets sick quite often with colds.
- She has been leeking all kinds of surfaces like her eating tray. When she is on the carpet she lays belly down and moves from side to side and also leeks the carpet. It seems as if she is feeling the textures.

Weeks 7 and 8

- It is getting easier for Isabella to fall asleep and putting her to bed is so much better.
- She has learned how to activate a toy that we have been working on for a few weeks. She now can push the lever on.
- She continues to crawl better and goes around the house lurking around different areas.

Weeks 5 and 6

-She is cruising much better and now even going around the corner of the table. Before she would stop once she got to the corner of the table. I still have to entice her to do it with the pacifier.
-Last week when we went to her horse riding class, she had the most fun she has ever had. She absolutely loved it from beginning to end.
-She continues to try to imitate sounds but still not successful.
-She continues to be alert, happy and social.
-The last seizures she had was 10-19-05. There were 2 (30 seconds seizures). She was sick with bronchitis. She was seizure free till 11-18-05 when she developed another cold and was running a fever. The seizures were also very short, she had a couple that day while she had the fever and then she was fine once we got the fever under control. I did the seizure protocol.

Weeks 3 and 4

We started our new exercises last week and Isabella has been doing well:

- She is now trying to imitate the pitches of some sounds. For example when we say "I LOVE YOU!" she says "AH, AH, AH!". Also, if I ask her: What does the cat do? She goes: AHH! or What does the dog do? She goes AH, AH!.

- On 10/19/05, Isabella developed a fever and ended up having two small seizures that day. One in the morning when she developed a 103 degree fever, then later that day in the early evening. I took her to the doctor and they gave her antibiotics as she had a cold. The seizures each lasted about 30 seconds long.

- She has been active playing with all of her toys and crawling around the house. She is still very vocal and paying attention and making a lot more eye contact.

- She is reaching for her pieces of carrots or food with her right hand sometimes. Before she only used her left hand.

Weeks 1 and 2

This coming Friday will be two weeks since we started the MAPS program. These are the changes that I have noticed on Isabella.
- She is more alert.
- Her body movements, including, head, eyes and even crawling are faster.
- She makes more eye contact. She was already making eye contact but now it happens more often and longer. Also she almost never made eye contact with strangers and now she is making more eye contact with strangers.
- She has been more vocal. She is still making the same AH, AH noises but it happens constantly during the day and night before bedtime.
- When Isabella is looking at her books and turning pages, she now moves herself or the book in order to ensure she is looking at the book properly. Before she would look at books and turn pages but it did not matter to her if the book was upside down.
- Isabella is wanting to stand a lot. She was already doing this, where she pulled to stand along the furniture and bookcases but now it happens all the time.
- She is constantly busy playing with her toys and books. She is constantly doing something. She has a lot more energy.

Started M.A.P.S. therapy

Isabella had her evaluation with Claudie Gordon Pomares on Friday, October 7, 2005. It was a 2 hour evaluation where Claudie observed Isabella and then we got our first week of exercises. Every week I will have to fill out an on-line report to let Claudie know about Isabella and then she will send me new exercises. It is hard to believe but the exercises we are doing now only take about 2-3 minutes twice a day.
I am very excited and I will be updating the Blog on a weekly or bi-weekly basis. Hopefully, there will be a lot of things to update on Isabella's progress.

M.A.P.S. SEMINAR IN TAMPA

FREE SEMINAR FOR THE M.A.P.S. PROGRAM. THE SEMINAR WILL BE HELD ON SATURDAY, OCTOBER 8, 2005 AT 10AM AT THE TAMPA CONVENTIONS CENTER.

REGISTER IF YOU LIKE AT www.unlimitedbrain.com

Ear tubes

Here are a couple of pictures of Isabella. In the one with the funny hat she is wearing her old glasses (I think one day she will recent us for those big granny glasses). The other picture is where she had just started to crawl and had a new set of glasses on (a little more modern and smaller).

Today, we went to All Children's Hospital and got ear tubes for Isabella. She had been battling an ear infection for a couple of months and since her seizures have been increasing. Everything went well and she is acting quite normal and happy already. The procedure only took about 10 minutes and she came out of the anesthesia very well.

8-10-05

Isabella was born 9-17-03, so she is almost 2 years old. She was born with Agenesis of the Corpus Callosum, Agenesis of Septum Pellucidum, she also has a chromosome deletion at
1q(44), has a VSD (small hole in her heart), she wears glasses (farsighted) and has about 5 in each eye, seizures, she is non-verbal and although she babbles a lot is only non-consonant sounds (mostly ahh), microcephaly, hypotonia, and has global developmental delays.
I started physical therapy at about 9 months, occupational therapy at about 10 months and then speech therapy at about 11 months. She has been getting these therapies twice a week, 30 minutes each session. Right now we are also doing music therapy once a week for 30 minutes in place of one of her speech therapy sessions. We will soon start hippotherapy (horse riding therapy) and we will also be starting a therapy called M.A.P.S. sometime in October. You can find more information about M.A.P.S. at www.unlimitedbrain.com
Currently, Isabella is able to crawl, pull to stand, trying to climb onto furniture, makes noises to call attention and to get what she wants, she loves books and turns the pages as we read to her, started recently to try to self feed (still a little sloppy) and is bringing the spoon into her mouth with minimal assistance although I have to put food in the spoon, she can see very well with her glasses and is very observant, she crosses midline, is a happy baby (smiles and laughs). She does not imitate which makes me believe she may have speech apraxia, she does not understand most simple commands; however, it is hard to judge when she is non-verbal. I keep hoping she will catch up cognitively.
The purpose of this BLOG is to give updates on my daughter's progress with her new therapies.