A Weekend Away

Here we are, Monday again. Why is it always so hard Monday morning after being gone for the weekend. I am pretty sure I do not do anything different to prepare for Monday when I am home. It was a typical Monday morning here, running out the door to get to school to find that the van doors are frozen shut and obviously I didn't start the van to warm it up. Not to mention missing hats and a little boy with a sore throat. I learned my lessen to not plant the idea of staying home again. I think he could have made it today but he was not giving in to the fact that I told him if he was still sick he could stay home.

The positives of the weekend:fun birthday party for Sonora and Evret at Space Aliens, the kids were able to play with their cousins, and I got to go out to dinner WITH OUT kids. All in all not a bad weekend away.

Every day I am just so pleased at things my children say or do. Evret was saying a couple new words, "Blaze and Got Ya". Sonora wanted a flashlight from the counter (I bought two) and I told her "no, it is mommy's". She replied back in a somewhat sassy tone, "but there is two of them." Now I know for most 8 yr old children that sentence would have been normal, but for Sonora that is a huge step in analytical thinking and verbal expression. It is so exciting to know that the wheels are turning and that she isn't just flitting through the days like she had been with all her seizures.

Can't wait to find out how school went for Sonora today after 4 days off, normally it is horrible because she doesn't want to go back. I am on a mission today to start figuring out how we can stay in MN longer when Shawn redeploys. Wish me luck!

A new week

FFFs,

Well, it is a new week. The first full week of the increase in medicine for Sonora, and well, it isn't working well. In fact, I think her seizures are increasing. There are so many things that are better with her. She seems to be talking more, but it is so upsetting when she constantly has to stop doing what she is doing because she has a seizure. It is just so hard to sit and watch her have seizure after seizure. She comes right out of them but still, it just takes so much out of her after a while. So, I guess we will be emailing the doctor soon and getting a medicine change. So, it is still a long road ahead.

Starting anew

Dear Friends, Family, and Followers,
It has been quite a while since I blogged last. I am starting to blog again for the ease of letting people know what is going on with our lives, especially Sonora. So much has happened since the last time I wrote that I am going to give a "quick" recap. We moved from Kansas to North Carolina in June. Well, technically we went to Minnesota for a month first and then came to NC in July. We had a great time seeing family and fishing however, as the trend goes, by the end of our vacation Sonora was not feeling very good and was having some pretty bad days. We arrived at Fort Bragg and about one week later found the local ER and UNC hospital quite quickly as Sonora's shunt decided to stop working again. Sonora had surgery on her shunt and while in the hospital I started pushing for them to start helping us with her seizures. Ten days later we ended back at UNC in the hospital where Sonora had a video EEG machine hooked up to record her seizure activity for almost a week. The results were not good. Sonora was having a multitude of seizures both day and night. There were even times that she was having seizure activity but nothing about her seemed to change, ie no eye rolling or staring etc. So, a new drug regimen was started. By the end of her stay the doctors thoughts were and I quote, "she's a puzzle". As you can imagine Sonora's was still having much more seizures then they wanted to see on the EEG but it was time to get home and let the medicines work. If anyone has been in the hospital for a week you know the feeling of needing to be at home! The hospital is uncomfortable, boring and just plain depressing at times.
For the next couple of weeks the seizures really seemed to be disappearing. Sonora was not having many staring spells and just seemed more alert then she had been in a long time. Then one day she started getting a rash. Sonora was on a medicine that if a rash began, the medicine would have to STOP. Of course, that is what happened, so good bye to lamictal and hello to zonisamide. Now ever since changing, I have noticed more seizures again. Also, school started.
School, what can I say about thee. This year we put Sonora in a self contained classroom (there's about 8 kids with different special needs to 1 teacher and 3 aids) instead of a normal 1st grade class. Last year she just seemed to be overwhelmed by the amount of children and the pace. However, Sonora is going to "specials" with one of the 1st grade classes this year. I would love to be able to say so far so good, but that is just not the case. It seems Sonora is a little defiant and refusing to do some of her work. Per the teacher she gets up around 1 o'clock everyday to get her backpack to go home because she is done for the day. She still has no real desire for learning and I am just not sure if she really understands WHY she needs to. She would love to just stay at home and be the queen in her dress and crown and be able to watch her movies, play her games or put together her puzzles all day. Any suggestions would be great. I have reverted back to putting sight words and other information she needs to learn on paper that is pinned to the hallway walls.
Anyway, Sonora's neurology appointment is tomorrow so we will have to wait until then to find out what is next. As for the other 2, well Carson loves preschool. He goes for about 2 1/2 hrs in the mornings every day. He is the social butterfly who would rather be there all day! Evret is walking everywhere. He is a climber and is into EVERYTHING. His two favorites are the dog water and the cupboard with the kids cups and bowls. He is definitely giving us a run for our money.
Please feel free to post any questions, comments or suggestions. Thanks for lending an ear;)

Finally, normalcy

Finally on Thursday, Sonora had no partial seizures. Friday, she was also seizure free. All day on Thursday I kept checking my email waiting to get news about how she was doing for the day from the nurse or the teacher. When nothing came I didn't know what to think. But I could just tell when she came home that she was feeling better. She had color and was talking and just perky. What a relief. Now though I think the plan is to still try and wean her off the one medicine. The only way to wean her is to first bump up the other med. I would be fine keeping her on both after the horrible week we had.

We are so blessed to have such a great teacher and nurse at Sonora's school. I can't even imagine not being with them for next year. The stress of having to hope for a great team again is just overwhelming. All we can do is hope that her new school is just as loving and understanding. So, now I guess it is time to start concentrating on moving again. Oh the stress never ends:)

And it continues

And it continues. Sonora had a great night last night and was fine this morning. She had one partial seizure at school that lasted only 30 seconds but of course that is enough to cause her to be tired. After drama and a nap she was feeling better until she came home. Poor Sonora was sick to her stomach and threw up. So now I have to decide is she sick from all the activity in her head, or that she hasn't eaten much today, or is it from bumping up the medicine so fast, or even is it a little stomach bug? Of course I decide to call the Dr, whom I think is probably thinking I over react, who doesn't think it was the medicine but to go ahead and cut back. So she is still having seizures on what she was on and maybe we need to start over, yet again.... I am so frustrated, and wish we could just go back to where we were.


So, this seems to happen to me often; I get complacent when there are not a lot of appointments on the calendar. As a result, I tend to forget to check to make sure everything is all set. I cancelled tomorrow's appointment for Sonora because she wasn't doing well. I cancelled the dentist the other day to go pick her up from school instead. I just realized that her spina bifida apt is during Spring Break which is great if we were going to be here! UGHH!! Working on getting referrals for her appointments and am just frustrated that I even have to bother. Really, Sonora is always going to need a certain set of Doctors and wouldn't it just be easier if we could make an appointment anytime with any of those specialists with out first getting permission from her PCM?

Oh, just another typical day. Oh and to top matters off my refill that was supposed to be ready on Monday wasn't ready and actually didn't seem to be processed at all. Really, can one thing go right this month???!!!

Tired and stressed

Well, you the know the old saying, spoke to soon? That was definitely what I did the other day. Last night and this morning a total of 3 partial seizures. Then, our daughter has been just confused and tired after each episode. We upped her meds again and with it I am left exhausted. Last night she slept with me and was agitated all night. I just want to it to all be alright. I want her EEG to be clean and have no abnormal waves. All we can do is continue with the meds and pray, pray that it will all be ok. To any of you out there who are dealing with the same problems, I pray for you and your family. There is no way to know that when you first become a parent that you can hurt so much when you watch your child in pain. My heart was ready to burst last night not knowing what was next or how much these seizures are hurting her. It is so hard, even though she is 6 she is delayed on her expressive language so to get any information out of her is so hard. Tomorrow is a new day, and all we can do is wait and see how she is. Good night and god bless to all those who have children with special needs and illnesses,

The weekend

Well, I am happy to report that my daughter did not have any more seizures this weekend. However, changing medicines that work with the brain is a little on the stressful side. Our princess who used to be the sweetest things turns into a screaming emotional child. She is demanding and yells at us, her brother and really has no patience. Now, I understand that some kids are like this anyway, but wow, a whole weekend of yelling gets hard to handle. If anyone has had to deal with the changing on medicine you know what I am talking about. How do you tell your son not to talk to his sister because she is just going to be upset. That is hard for a 4 yr old to understand. Not only that but I don't want him to remember his sister when they are older as a pain or not nice.

We have made it through the weekend and that is what is important. Our daughter is back at school today and apparently doing well since we haven't heard anything. I am not sure if there is a limit in what one can take. If anyone knows good ways to destress that would be great.

On a note about moving, I think we have decided on an area, now we just have to hope to find a good rental house. Ah, the stress continues.

I'm back

I am back. I stopped writing only after a few posts but I find that I need an outlet and am hoping to find it in writing. I am a mom. I am a mom of three wonderful children ages 6,4 and 4 12 months. MY six year old daughter, Sonora, has Spina Bifida and really is a daily challenge lately. Today she had a seizure at school. She is fine, she came out of it on her own, but still a scary situation none the less. The school was great they took precautions and called 911. She didn't need to go to the ER but still another bump in the road. We are or were I should say changing her medications and had been weaning her of a couple. Apparently those medicines were helping more than we thought. So her new medicine was upped and will be upped again in 3 days. There is nothing more scary then getting the call from school saying they have called 911 for your child. I grabbed the baby told my 4 yr old to put on shoes, grabbed him a jacket and out the door we went.

This is just one event in the what is seeming to be a very bad year at school for Sonora. Last year at preschool Sonora loved going to school. She completed all her work and never gave the teachers a hard time. This year, she is like a whole new person not wanting to do any work, and refusing to do everything. Eventually she complies for part of the time. She nows has a full time para educator with her during the day to keep her on task otherwise she would wander around the class room in her own world. What happened? Has anyone else had this happen to their children? She was not being treated correctly for her epilepsy I often wonder if that is what has changed my little girl into my little monster.

My stresses only start with her daily attitude. We are in the Army so we will be moving in July to North Carolina. Now we are having to find a good school for Sonora so that I know that she is well taken care of again and being pushed academically. If anyone is interested in the whole military move, keep reading, I plan on posting almost daily everything I do to move our family.

I hope that this blog shines light on life in the military and maybe helps others like me know that they are not alone.
Until tomorrow, good night.