I'm excited!!!

We met with the director for therapeutic riding on Monday to see if we could get Brooklyn enrolled in their program. The meeting went great and I am so excited, not only is B going to ride but so is Devin AND Danyelle is going to volunteer there! Woot! I was afraid that they would say Brooklyn was too young because their website says ages 3 and up but she said the younger the better. I brought up Devin having speech therapy and asked if he would be able to ride and she said "absolutely!" He will love it I think, I can't wait to see the look on his face the first time we set him upon the horse. I can just see his little grin in my mind.

Our first day is this Sunday. I know Kathi said they will start B out on a miniature horse at first to get her accustomed to the movement and the rhythm and eventually she will ride the bigger horse. Not sure about Dev, I think I may ask that he be started out on a smaller horse too just to be safe. I am thrilled though, riding is supposed to be so beneficial in all areas of development for the disabled, I really hope she benefits from this! I will be sure to take a ton of pictures! ;)

I don't think I posted about her eye dr. appointment. She still has Strabismus which basically means her eyes deviate. We have another appointment in October and if they don't correct themselves by then he said to plan on doing surgery on the muscles of her eyes.It makes me cringe just thinking about it but I think the surgery is relatively simple and recovery time is short and painless. I was relieved when he said he didn't recommend patching her eye at this time. I went through that with Cody and it isn't much fun.

EEG results

It totally slipped my mind to post Brooklyn's EEG results for those of you who read my blog!

We saw my favorite Neuro last Wednesday *inserts sarcasm* to discuss her 24 hour EEG results. The visit was short and I still dislike that place with a passion. She read a bunch of medical stuff off which made no sense at all. She left the room to go talk to the Dr. and when she returned she said they looked at her MRI images again and her scan was consistent with her brain abnormalities. They said she has Static Encephalopathy which means permanent and unchanging brain damage. They did not detect any seizures so that is good news. It's confusing to me though, when you Google the term it basically means Cerebral Palsy which is what I thought she had in the beginning but that Dr. told me she did not have it. Now that is the diagnosis based on her EEG? I just don't get it. I'm anxious to speak with the Neuro in Boston to see what she says. She also said she felt strongly that she did have a form of Rett's Syndrome. We did test for it and it was normal but there are so many variations of it that often times the tests do come back normal even though they do have Rett's. I've been feeling down about hearing once again that my daughter is brain damaged. After talking with her PT about it on Friday she said "static" is actually a good thing, meaning she won't regress or get any worse. She said the brain is an amazing thing and that she has seen many cases where the brain overcomes areas where it is compromised and that B has made such tremendous progress already in areas where she was behind. She said it was good news rather than bad. Easy for her to say huh?

Also, her PT told me on Friday that she wanted to hold off on getting braces for her legs, in fact she said she may not need them at all. We've been working hard every day at standing and she is needing less and less support from me and seems to not try and bounce like she used to. She will still require a lift in her shoe though once I get out and get her a pair. I pray she walks someday though I know it's probably years away. She's almost 1 ½ and still isn't crawling. Oh, and that is another thing the PT mentioned was getting a crawling assistant. Not sure what sort of equipment that is but I'm sure it supports her body weight as someone physically moves her arms in a forward motion. Moving her arms is the only thing stopping her from crawling. She is strong enough cause she is up on her knees all the time, it's just figuring out what she needs to do with her arms.

We have a meeting with her team of therapists in the 13th and I've been pushing to have therapeutic riding added to her therapy plan. Her PT agreed that it is highly beneficial and that it helps children improve their skills in all areas, PT, speech, motor and trunk control etc. I really would love to see her be able to do that! Flying Changes is located right in Topsham too so that would be perfect for us!

She will begin speech therapy again and thankfully she will be coming to the house. We meet this morning at 9:15. Between her and Devin we have 6 sessions a week! Crazy, crazy, crazy!

Today Devin had his first speech therapy session. I expected him to be very shy, and he was, but not as bad as I had imagined. The first few appointments are just so he and his therapist can get to know each other and since we are going twice a week I hope he becomes less and less shy as he becomes more comfortable. She had some concerns about him having low tone in his face and asked us to introduce an electric toothbrush to him to stimulate his mouth. He has one and I had forgotten until my sister reminded me today that he kept sticking it down his diaper. lol I have no idea where he would have learned that trick from. Anyways, she suggested we practice blowing bubbles, using a horn and massaging his face, basically the same things we were told to do for Brooklyn. She also was concerned about his constant mouth breathing, though I told her that may be due to him just getting over a cold. She said she would watch him over the next few appointments and we may need to think about having his tonsils and adenoids out. Let's hope not, poor Cody had his removed when he was just a bit older than Dev and it wasn't much fun. I told her that he jargons all day long and she said she'd need to hear him first but it may be that he has trouble with phonics. I am just so glad therapy for him is underway. I want him to talk so badly! He is saying a few new things; he says "choo, choo!" when he sees a train and does many animal sounds. And he says "Sure!" He has been signing "bird" all the time too which is so cute to see. I'm really going to make an effort to learn some more signs, I know I will need to know them for B too so I just have to sit down and memorize them. His therapist suggested a show called Signing Times that kids are supposed to really enjoy. I may look on Ebay for some DVD's.

And Cody's butt is finally healing. At his appointment today the Dr. said it was looking much better and thought we'd only have to change the dressing for a few more weeks. That has become my job, oh joy, but I guess it's better than having to bring him to the doctors every afternoon. I can't believe his surgery was a month ago today and we are still having to tend to his bum. It stinks, hee hee. No seriously, it really does stink. Not his butt, but the wound. It's mean but I hold my breath as I change the gauze, it is really that bad. His Dr. is a hoot though, Cody had gone to church with a girl last Sunday (yes church!) and he was telling Dr.S about it and he laughed and said that Cody was probably praying to god that his butt healed. Was pretty darn funny at the time. lol

Some of you may be wondering how Dany is doing. Seems I don't have much to say about her since she behaves herself for the most part and isn't sick or in therapy. ;) She is doing well in school and brought home her permission slip for classes she's taking next year as a freshman. I can't believe she is going to be in high school, how on earth do the years go by so quickly? I hope she continues to do well in school, I worry since Cody's shenanigans began once he started 9th grade, I really hope she doesn't do the same. She is a social bee, always with a friend or going here or there. She and a few other kids have their own dance group and they have been practicing at the library after school so that has kept her busy and out of trouble. *knock on wood*

No word on the results of B's EEG yet. I was hoping today we would hear something but I kinda figured it wouldn't be until the middle of the week. I know they are probably busy but I'm a worried parent and I want to know what the scan showed. Guess I won't hold my breath waiting for their call, I'll save that for when I'm dealing with Cody's rump. ;)

Our appointment went well I think. I liked her much better than the Neuro we saw here in Maine.

Brooklyn had fallen asleep in my arms in the waiting room so she was asleep for much of the visit. It worked out well though because it gave us time to discuss all the issues we are having. She looked over her MRI images and explained to me that her brain has formed correctly, it's just not developing correctly. She said she does not have Microcephaly and that her head is within the normal range (30%). Her corpus callosum is too thin which we knew already. She said she does have low muscle tone (hypotonia), not so much in her arms but severely so in her legs. She said her legs are like wet noodles which of course makes it impossible for her to walk. I asked if her delays were caused by the fact that she has low muscle tone or because of her callosum disorder and she said neither; her delays are caused by her brain as a whole. Her entire brain is underdeveloped. We spoke in depth about what I believe to be seizures that she is having and she wants to do a 24 hour EEg test on her. I questioned whether or not they would need to be treated because they are so short in length that they don't seem to be affecting her much and she said if it shows that she is having them, she definitely wants to treat her for them. She said they very well can be slowing her progress and once they are treated we may see her progress much quicker then she is now which would be wonderful. I told her that for both of her EEG's she was sedated and she said they absolutely do not sedate their patients for EEG's. That was one of my big issues, how would she have a staring spell/seizure if she was sleeping? She didn't have the records from the geneticist her in Maine but wanted to see what tests had been done already, more specifically, what metabolic testing had been done. As far as what Brooklyn's future will be like, she couldn't say. She said a few milestones to work towards were, sitting unassisted by 1 1/2, pulling to stand by 2 and walking and trying to communicate by forming words by 3. She felt she was delayed by 8-10 months. She also said to be as aggressive as we could be with therapy and never ever give up hope. She examined Brooklyn after she woke up and said she was so happy that she got a chance to see her awake, that she is alert and happy and very social. She said she sounds much works than she looks and that was very nice to hear. I told her that the Neuro up here said he didn't need to ever see her again, that it was basically my call and that I could make an appointment in a year if I wanted to. She totally disagreed and said she can't believe he wouldn't want to follow up on her, which is exactly what I thought! She will be seeing her every 3-6 months and we have an appointment with her in June. She also wanted us to see a Metabolic specialist at Children's so we have another appointment on April 24th. And we are just waiting to hear when her 24 hour EEG test will be scheduled. I am so glad I followed my gut instinct and insisted we get a second opinion.

On the way into the hotel at 5:00, the day before our appointment, I get a message from the Neuro department in Boston saying that they just received a message from our insurance saying they will not cover any of our appointments at Children's. So, we will be paying out of pocket for each visit we have. Totally sucks but what can you do? I had an appointment with our case worker today and she is going to make some calls to see what she can do. B's pediatrician also said she'd do whatever needed to be done to help us out so I am going to call her as well.

Update on Cody: Well, the day he had his stitches out he fell on the ice and tore his incision back open. I had to bring him into the Drs. on Fri, Sat, Sun and Mon. so they could change the packing. We went today and the blood clot is finally dissolving, thankfully but he has a few more weeks of healing time. The Dr. insisted I look at the wound as they cleaned it out. I have seen his bum but not the actually incision and wow, I can not believe how deep it is! It is like looking down into a well is the only way to describe it. He is just miserable too and complains non stop about not being able to work, not being able to sit, not being able to see his friends. I will be as happy as him when this is over.

We had another OT therapy session today. I feel like a broken record when it comes to discussing Brooklyn's issues but I'll be honest and say it's consuming me. I worry day and night about her diagnosis, her future, the months and months of therapy she is going to have to endure. It all makes me so sad. I feel helpless. I am helpless. I brought up a few of my concerns which Janet was concerned about as well and said that I should take videos of her and bring them to her neurologist appointment on the 27th. I've mentioned her eyes before but other concerns are that she has been jerking her body to the right when holding her in a sitting position. She said she could feel all her muscles stiffen and contract and felt the movement was involuntary. Along with that she is also making an odd facial expression that happens randomly. B also has frequent staring spells that last 10 second or so. You can say her name over and over again or snap your fingers and she is just in another world. They happen off and on all day. She said she thought they were a type of seizure called "Absence seizures" and after reading about them it seems to be what I'm seeing. I'm going to speak to the Dr. about it and try to get a few video clips to share with him. I'm also going to start keeping notes; how often does she have them, what is she doing when she does have them, how long do they last etc. Could there possibly be anything else wrong with this poor girl? I know with many of the neurological and genetic disorders there are a list of symptoms they have and she certainly has her fair share.

An Ordinary Thursday

I sat down earlier today to make a list of appointments so Dale could bring it to work. His employer is being very understanding and has told him to take all the time off he needs to go with us to B's appointments. I am so thankful for that! Anyways, the point was that the list is a mile long! You wouldn't believe the crazy schedule we are going to have for the next few months and on top of that are so many birthdays and the holidays to think about, plan and shop for. I am going to be The Grinch this year I'm afraid. Money is tight and my spirits are low. I hope in the next few weeks I'll be feeling a bit more jolly, right now though it's just one more thing to worry about.

We met for the first time with Janet, her OT therapist yesterday. She did much of the same things with Brooklyn as her physical therapist. We have numerous exercises that we practice daily. Once she has gained some strength in her hips and is able to sit unassisted she will be working more with her fine motor skills. Since this was her first time interacting with B she voiced many of the same concerns; she doesn't use her right side to touch and play with toys, her eyes are wandering, her movements are uncontrolled and all over the place, she still has many primitive reflexes and sensory issues. I'm becoming more concerned about her eyes and her appointment with the opthamologist isn't until Jan. 2nd. Why is there always such a long wait?

I made an appointment for Devin to be evaluated for speech therapy today. It's not until Dec 5th but since he still isn't talking I guess it's something we need to look into. What's one more appointment right?

Cody has a new girlfriend I think. He met her at the McDonald's where he works and they seem quite buddy buddy though he claims they are only friends. Yeah right. I wonder too if they are having sex. I asked him and he said "Mom, I'm 17!" like duh mom, all 17 year olds are having sex. Ugh. I may just be paranoid but I know he has spent time alone with her and she is a few years older than he is so I wouldn't be surprised. We have had enough talks about the birds and the bees, I hope he is smart enough to wear a condom.

We had our first Physical therapy session this morning. She only stayed for about an hour since B seemed to be a bit irritated towards the end of it. I asked her for some suggestions for Christmas gifts based upon where Brooklyn is developmentally and I was so, I don't even know what the word is, shocked I guess that she recommended we get her an activity mat!! I realize she is behind, but an activity mat? Geesh. She said it would help her to start reaching out for toys. I was thinking more along the lines of a musical table or a walker but I guess that is something she's not going to be ready for for awhile. Maybe I'm still in denial, it's so hard to hear things like her saying today she was at a 4-5 month level. That just breaks my heart! Anyways, we have a few different exercises that she asked us to do with her each day. Mainly we are working on sitting up and using her hands to balance herself while sitting up. The Occupational therapist will be here tomorrow and I'm interested to see what she will be doing with her.