Update about seizures

For those of you who don't know, I took Hannah to the ER today b/c she was jumping (seizing) about 8 times a minute. As you know from the last post, she was sick last week and on top of the had run out of her seizure medication. Well she got back on her med, Monday night, but her jumps and general appearance/health just kept getting worse. She was very cranky and was jumping a lot. She started jumping while she was awake on Wednesday, which is very unusal. She usually just jumps in her sleep. On Thursday, I kept her out of school and took her to her pediatrician. Dr. Morgan saw her jumping and diagnosed an ear infection. She told me to call her neurologist to let them know how frequent she was jumping. I did but I grossly underestimated how often she was doing it. They told me to up her seizure med and call them back Monday. So then today, I took her to school, but the school made me come get her, b/c she was seizing so much. My friend went with me to get her and we sat in the parking lot and counted 8 and 9 jumps for the two minutes we timed it. So I called the neurologist back and after a lot of deliberation they told me to take her to the ER. We waited 4 hours and finally the neurologist wanted to just up her meds and send her home with out even seeing her after they told me to go to the ER. I was furious! The attending ER was mad too and actually called the neurologist and got him to come. So we waited a little bit longer and finally the neurologist on call (not her normal one) came. After he looked at Hannah for a while, and timed her jumps. He still upped her meds, but in a totally different way then he was originally planning on doing. He didn't do an EEG or anything like that which I would have preferred, but at least he finally came and at least a neurologist has finally see her jump in person. He told me to up her meds and to call the office on Monday to see how she's doing. Please pray that this flood of meds will make these jumps stop and that maybe since he's actually seen them now, they can truly figure out how to help her.

I know I've been a blog slacker. Forgive me. Hannah is doing well. She seems to love school. She smiles going in and coming out. They are always doing neat things like stuffing a scarecrow, going on a nature walk, a fall carnival, and practicing trick or treating at school. Her teacher is always telling me what a joy she is and how smart she is. I think school has been very good for Hannah. She is a lot more vocal now, although still not actual words. Also she is at least interested in trying to feed herself. Several times when I have been feeding her she has grabbed the spoon from me. She has a hard time getting it to her mouth, but before she went to school she wasn't even interested in feeding herself. She is really making great strides in her gait trainer. She can now take about 8 to 10 steps in a row when she is highly motivated. For Halloween, Hannah was a princess and I made her wheelchair into a throne. I think she really liked going to our church's Trunks of Treats and watching all the other kids.
Medically, Hannah is about the same. We have seen most of her specialists in the last two months with Neurology and GI still to come in December. One piece of good news, her orthopedist x-rayed her spine and there are no signs of scoliosis. I was worried about that because Hannah has a rib that sticks out. He thinks its just an asymmetric rib. I can live with that. We switched ophthalmologists but the new one doesn't think the crossing is that bad. She said that if we tried to fix it right now we may make it worse by it going out instead of in. So its just a wait and see game right now. She had not been doing her "jumps" (seizures) in quit sometime, so when she ran out of one her seizure meds I wanted to see if maybe she could just stop taking them. However, after a few days off it, she has started jumping again. I am hoping that the DR will call in the prescription tomorrow. She had strep for the first time this week. She seems to be better now.
I guess that's everything for now. Thanks for always keeping Hannah in your prayers. We feel them and appreciate them.

School

Hannah has been in school for a little over two weeks now. She seems to really be enjoying it. Her teacher is really nice and seems great with the kids. There are 5 kids in her class. One little boy gives her a big hug and kiss every morning when she comes in. So far she doesn't like to eat or sleep there, but I kind of expected that. Apparently she is quite the celebrity at school because I know several of the teachers and regular ed students there so they all wave at her and talk to her when they pass her in the hall. Today I chaperoned her class on their first field trip to see the animals at the Gwinnett County Fair. It was really crowded and hot, but I think Hannah had a good time. A lot of the animals were too low for Hannah to pet in the wheelchair, but she got to pet a few things. There also was a clown there that gave all the kids a balloon. He asked me if I was her mom and when I said yes he said "She just pierced my heart from way over there..." and then went on to tell me that he is a Shriner and that I should get her involved with the Shriner Hospital. I never really thought that there is anything they could do, but I may call them to find out. My Granddaddy was a Shriner so Shriners hold a special place in my heart. I guess that is all for now. Thanks for always remembering my sweet little lady.

IEP Meeting

This week we had Hannah's IEP meeting to determine her placement and goals for the year. Sometimes IEPs can get very emotional and upsetting to the family, but I am happy to report that Hannah's IEP was very smooth and happy. She will go to Head Elementary School's preschool program which is where we wanted her to go. All of the goals that I would have gotten ugly about if they were not included were already written prior to us getting there. Her goals are a nice mix of things I think she will accomplish easily and some that will be a challenge. Her teacher is young but seems very nice and excited to have Hannah. I am going to bring Hannah to class next week so that she can meet her teacher and see where she is going to go. Hannah will start the Tuesday after Labor day and will go to school 4 days a week. I decided to keep her out of school one day a week to do private therapy. Please remember us in prayer on Hannah's first day because I know I will be very emotional. I am excited about all the things she is going to learn, but it is hard to trust my nonverbal 3 yr old (by then) to stranger. Thank you for always remembering Hannah and our family in your prayers. They have sustained us through all of this.

EVALUATION RESULTS

THANK YOU FOR YOUR PRAYERS, HANNAH DID AWESOME AT HER EVALUATION! She was very vocal. She was hitting switches, making choices, and generally doing anything they asked her to do. They would tell her to hit the red button and she would, and then hit the green one and she did that too. All the evaluators just loved Hannah. They all made commits about how beautiful she is, how sweet she is, about her eyelashes, and her curly hair. They kept saying that whatever teacher she got was going to be so lucky.
The best news is that they all agreed that she will NOT go to the center and will probably go to the preschool class at the elementary school we want her to go to. The thing that meant the most to me was when the lady that was testing her cognitive ability said, "I want you to know that even though her scores are going to come back very low b/c she physically can't do what the test is asking her to do, we all agree that her actual cognitive ability is at or above where it should be." I have always felt that way, but to hear her say that just melted my heart. Her IEP meeting will be on Aug 25th. This meeting will officially decide which class she is going to go into and what her goals will be for this school year. She will then start school we think on the Tuesday after Labor Day. Thank you all for your continued prayers.

EVALUATION

Hey just a reminder Hannah's evaluation is a week from tomorrow August 11 at 9 am. Based on the results of this eval. will determine what class she will go into for school. Please pray that she will really show all of the things that she can do. Pray that she will not be shy or scared. Please be in prayer that the very best class for Hannah will be very clear and that she will really blossom in this class.

I know it has been a while. Summer is flying by. Big Brother Joseph was on the swim team which took up the entire month of June and then we went on vacation to Seagrove, FL. Not very much has been happening lately with Hannah. She has been battling a really bad ear infection. After two rounds of antibiotics, I am not totally convinced that it has cleared up yet. Please pray that it will clear up because she has been in a lot of pain.
Two things that are coming up in August is first of all her evaluation for school on August 11th. Please pray that she will really show the team what she is capable of doing and won't decide to be two and not do anything. We are hoping and praying that she will score high enough to go to the special needs preschool at Head Elementary. Her other option would be a special needs center. While the center is a really nice place and they would have access to a lot of equipment, we want her to have higher functioning models. We don't want her to be highest functioning child in the class. Please pray that the best class for her will happen and that she will have a fantastic teacher.
The second thing in August is that a ballet school near our house is going to have a special needs music and dance class. Hannah was personally invited by the teacher to join this class. We are really interested to see how this class is going to go, and praying that Hannah will really enjoy it.
Also in August I will need to renew Hannah's Medicaid please pray that it will go smoothly. Thank you for your continued prayer for our family. I know that God is listening.

HANNAH'S HELPERS AND P.U.R.E. Ministry

There hasn't been much to update medically lately, but I wanted to share two things that have really touched my heart lately. First is I have formed a team of 5-6 ladies from my church to be "Hannah's Helpers". These ladies will be responsible for taking care of Hannah in the toddler room during the church service every Sunday. With all of Hannah's friends learning to be potty trained, and things like that, it was getting too hard for the normal two workers to manege all of them as well as tend to all of Hannah's extra needs. It really warms my heart to know that these ladies will be taking care of my sweet Hannah. They are such a blessing to me and I thank God for them.
Second is the P.U.R.E Ministry. I have been hearing about a conference they are going to do in a few weeks on the radio, and when I went to their website I was challenged and blessed by their definition of people with disabilities. I have never seen people like Hannah presented in such a positive light.
I love their definition of people with disabilities like beautiful little Hannah. PURE Stands for:
P--Perfectly created by a loving sovereign God, designed for His purposes.
U--Unique in his or her own gifts, blessings, talents, and desires.
R--Receptive and responsive to our communication, touch, and acts of love.
E--Eternal - There are No Disabled Souls.
If you get a chance check out their website www.pureministryproject.org or look them up on Facebook.
I guess that's all for now. We will be spending our summer at the pool. Thanks for always remembering us in prayer. I know they sustain us.

This month has been busy with Dr appointments. First she had her check up with the ENT about her noisy breathing. He basically said he's still not concerned about it and still thinks she will out grow it. I guess that's good but of all her things, that draws the most negative attention and comments and I was really hoping he would do something. Next was the neurologist. She still has good bedside manner I guess, but I'm starting to feel like she's too busy and too rushed as well. She wouldn't even listen to my concerns that I really feel like Hannah has other issues besides CP and didn't even look at the video I made about Hannah's crying fits when she is going to sleep. She did agree with me that Hannah's not getting enough sleep and prescribed a sleeping pill. She said if that didn't work she would send her to a sleep specialist. I have given it to her for two nights and so far I haven't seen much difference. She said give it a couple of weeks so we will see. I don't go back to her for 8 months (like I said too busy).Lastly she went to her ophthalmologist. I was hoping he would be ready to do something about the eye crossing, but he said lets wait and see four more months. He said the problem is that she is not crossed all the time and usually they only do surgery when the eyes are crossed all the time. I guess 99% isn't enough for him. I was also disappointed because I wanted him to fill out a form so she could get vision therapy when she goes to school but he said her eyes were too good for that. ARHHH I am so frustrated with all these DRs. I want so badly for somebody to take an interest in Hannah and really try to help her. I wish Atlanta had a team of Drs that would work together and not just a bunch of egotistical people that are more worried about making money then trying to help someone. Please pray that I will not be so frustrated and that some doctor or team of doctors will actually try to help Hannah. Please also be praying for the evaluations she will have in July or August so that she can get into the best class for her. Next appointment is May 11th with her orthopedist.

Just a quick update on the swallow study. As usual Hannah's test was a waste of time. She would not drink very much of the barium. All they really told me was that she has an inefficient suck and here's a big shocker... "she has reflux." I couldn't believe that girl told me that like I didn't already know that. UGH. They told me to make sure she sits upright to eat/drink and to follow up with her pediatrician if she continues to refuse to drink so she doesn't get dehydrated. Oh well at least they didn't suggest a g-tube to me. That doesn't mean they won't in their report to the GI.

We went and had our Spring pictures made today. Here's a new one of Hannah. On Monday Hannah goes for a swallow study to see if they can figure out why she is not really wanting to take liquids and why she sometimes coughs and sputters after drinking. Please pray that it will go well and will NOT end up with the Dr wanting to put in a G-Tube. May you and yours have a blessed Easter Season. HE HAS RISEN!

The first transition meeting went pretty well. It was basically a time to get a little info about Hannah and to decide when the evaluation will be. The school social worker had tentatively set up Hannah's eval for July 29th, when I questioned if all the therapists would be back by then and that I would not agree to the eval unless a PT, an OT, a Speech and Vision therapist were all there. My babies can't wait coordinator laughed and said "see I told you this Mom knows everything." So now Hannah's eval will either be July 29th or Aug. 11th depending on when the therapists are all back from Summer Break. After the meeting they took us to see two classes at Oakland Meadow. One was much higher functioning then the other. We have been encouraged to look at cross categorical class at a regular elementary school as well. Hannah would be on the lower end of function in that class, but if she can prove she is cognitively capable of being in that class it will be better in the long run. Please pray for this process through the summer. Pray that Hannah will truly show what she is able to do in the eval, and that we will have great wisdom as to the class that will provide her with the most attention, as well as the most opportunities to really learn.
Hannah is getting her teeth cleaned on Monday and then no more appointment (outside of therapy) until April 15! Yeah. Enjoy this lovely weather.

Catching up...its a long one.

I know it has been a while and I'm sorry. To be honest I just haven't had much energy to write lately. It has been a busy month both for Hannah and for the rest of the family. To add to that Hannah is not sleeping well at all. It takes several hours to get her to go to sleep and then she wakes up several times during the night. Hannah's sleep habits have been extremely taxing on the whole family. This weekend we were a host home for D-NOW for the youth at our church. We had 6 high school boys stay with us all weekend. The sad thing is that it wasn't the boys that caused lack of sleep in the house it was Hannah (at least the second night). The first night of the weekend both kids stayed with my blessing of a friend Pam, and even though I knew my house would be over run with boys, I was so excited to finally get a good night's sleep. Isn't that sad! Please pray that we can figure out a way to help Hannah get to sleep and stay asleep.
On Tuesday Hannah went to a mid year check up at the pediatrician. Overall the Dr was pleased with Hannah's health and developmental progress. She was a little concerned about Hannah's weight because according to her scales Hannah had lost over two pounds, but I really feel like it was a fluke. Most of the concerns I brought up to the DR ( like the sleep stuff) she either wasn't concerned about or told to me to talk to one of the other specialists. So overall it was a little bit of a waste of time.
On Friday she went to the GI. According to her scales Hannah's weight was only a few ounces less, but she had gained over 2 inches since January. I definitely think Hannah has had a huge growth spurt recently, but I'm not sure it was two inches. We mostly talked about how the Nexium was working and how that at least 50% of the time when Hannah is arching the Maaloxx does help her stop so that means that the arching is at least partially GI related. Unfortunately, Hannah is already at the strongest dose she can take of the Nexium and is still refluxing and arching a lot. She wants me to start back giving Hannah the erthomicin, but when I went to fill it this weekend I was told they no longer make it in a suspension so I will have to either go to a compounding pharmacy or get something different. Please pray that we can find some permanent relief to all of this GI stuff. One nice thing at the end of the appointment the DR said, "You are the best mom.... you are so on top of everything and really know exactly want is going on with your daughter." That made me feel really good.
Coming up in the next few weeks Hannah will make the rounds to all her specialists. This week she will go to have her AFOs checked. Since her feet have grown, I'm hoping he will make new ones, but I don't know if insurance/medicaid will pay for them. Then the next big thing is on Monday March 22, we will take Hannah to start the transition process that will put her into the school system when she turns 3 in September. Please start bathing this process in prayer. Pray that God will give us wisdom as to exactly the right class and school for Hannah to be at. Pray that as she's evaluated she will give them a true picture of what she is actually capable of doing. And pray for my momma heart as I will send both my babies to all day school in the fall, as Joseph will start Kindergarten. Well I guess that's everything. Thank you for always remembering our sweet girl in prayer. We truly feel and appreciate them.

PRAISES

Hannah's Medicaid Got Reinstated!!!!!! Thank you so much for praying about this issue. It turned out to be a clerical issue. I feel like a weight has been lifted off my shoulders. Thank you for your faithful prayers. It means so much to us.

WE NEED YOUR PRAYER PRAYER WARRIORS!

We received a letter in the mail today that says that Medicaid is terminating Hannah's benefits at the end of this month. So now starting on Monday we have to go through a lengthy appeal process. WE CANNOT AFFORD TO LOOSE THIS COVERAGE!!!!! Please pray that it will all work out ok. Please pray that I won't get too worked up ( more then I already am!) or worried. Please cover this issue in prayer.
On a happier note Hannah walked with her PT holding her up the complete circle of the downstairs of our house. For those of you who don't know that is a lot of steps for her.

UPDATES

I met with the new GI this week. She seemed pretty nice, however I don't really judge first impressions anymore. She said that we were basically doing all we can do for Hannah's reflux. She did change her from Previcid to Nexium b/c of insurance stuff, but so far the insurance hasn't approved the Nexium either. I expressed my frustration about the arching and how neurology says its GI and GI in the past as said its neurology. This GI said an easy way to test it is when Hannah is arching give her some Maaloxx. If its GI related, she will feel better and stop arching and if it is neurological it won't make a difference. Of course Hannah hasn't really arched since then to test it out. She wants to see Hannah back in two months, so at least she still plans to treat Hannah and not just chalk it up to neurology.
Hannah had her sleep study last night. She slept like a champ for almost 7 hours straight which she doesn't do at home. However she hardly jumped at all. They kicked me out of the hospital at 5 this morning and said I didn't need to wait to speak to a DR which to me indicates everything was "normal". Of course when we got home and went back to sleep Hannah just about jumped out of her skin. So this was another wasted test. I am getting really frustrated and feel like we are never going to find answers or solutions to these issues. Please pray that I will not loose hope and will not be so frustrated.