Goodbye June, Let's hope for a great July

Well, Jen has had alot going on this past month. We have been back to GI a few times. Her feedings are going o.k., but the healing of the site is still an issue. The past couple weeks she has had GI issues, and hasn't been feeling herself. Other long awaited appointments needed to be cancelled due to it all. A telltale sign of her not feeling good is she is very quiet, not real vocal and seizures will be down.
The only benefit, her seizures are down. Hoping she will wake up this morning feeling great and looking to eat something. I need to reschedule the few missed appointments,and get back on track.
Welcome JULY!! Summer is my favorite time of year, as the beach is my favorite place to be. We live right here, so close to the beach and it is already JULY and I haven't had anytime to go put my feet in the sand.
Goals for July - Keep Jen healthy and try to have a little fun along the way!!

Surgery is inevitable so they say

Well, this past week has come with more news of Jen needing surgery on her spine. In the past 8 months, it seems to have gotten worse by 25 more degrees. She is now at about 75 degrees, and the doctor says it will most likely continue to get worse. We will go back in 4 months, with the plan of surgery being soon after. This will give her some more time to gain weight and stabilize her nutrition too. Jen's seizures have been quieter up until Thursday. Well, here we go again with seizures. Of course another phone call from the bus company coming home Friday afternoon. Jen's seizures seem to be picking up again in numbers and are intense. There has to be a solution, but what?

Keeping us busy!

Jen has been keeping us busy this past couple weeks. One good thing, her seizures seemed to settle a bit the past few weeks, still having them daily but fewer and less severe. But of course if those are better controlled, she must still keep us on our toes! Last week we had a new problem with her feeding tube which called for a visit to the Hospital, of course this was on a day she was scheduled for botox in her ankles, and at different hospitals all together. Needless to say the botox appt. got cancelled and we dealt with the g-tube issue. Ever since she had the g-tube, we are also dealing with her comfort level of her TLSO brace. It has caused more problems than good lately. Along with her therapist we have decided to discontinue it for the next week as we have an orthopedic appointment and hopefully they will have a better solution. There was talk of a molded type chair instead of the TLSO last time we were there, so we are hoping to be able to pursue that. Jen is just so uncomfortable in the brace, and we know it is not helping maintain her spine at this point, so we will wait til next week for the final decision with the doctor. SO.....now we have the g-tube resolved for now, the TLSO on hold, her botox appointment rescheduled, thinking we are on a good path again......until late this afternoon, I heard from her school nurse, she has had way too many seizures today, and then on the bus ride home had 2 more!!! She is settled for the night, and I am hoping a good night sleep will help for a good day tomorrow. Like I said, she keeps us on our toes!!

6 Pounds!!! Good Job Jen!!!

Can't believe it is a month since I updated this blog. Jennifer has been doing good. We went to a Nutrition appointment yesterday, she gained 6 pounds in the last 5 weeks! She is going in the right direction now. Jen is still eating up a storm and we are supplementing through her feeding tube. Now they want us to get more free water into her. Always something, but at least everyone is thrilled the extra calories are working! The other subject are her seizures. They are not good, there has been no decrease since we changed her meds to go through the feeding tube. We were all holding out hope that this might help, but that is not the case. We go to Neurology next week. I am sure we will discuss the VNS again, and see what else they have as possibilities. Traveling on the bus to school is scary. It is not a good situation with the seizures and long bus ride as I have mentioned before. We had 2 more incidents recently where they were calling us as she was on her way home with seizures on the bus. Always something, but at least she is gaining the weight she needs to. One step at a time as they say.

Getting settled and now back to school

Well each day is getting easier with Jen's feedings. She still can't tolerate alot at a time and they run very slow. Maybe this is the way it will need to be and we are adjusting. I really thought giving her meds through the tube as well was making such a difference. She did great the beginning of the week, very few seizures, but as the week continued, her seizures have once again picked up. Thursday, Friday and Saturday she had quite a few each day. Today she was very quiet all morning, not interested in lunch. She seems o.k, and healthy, maybe just a quiet day, but then again, we don't have quiet days with Jen too often.
Hopefully she can get back to routine of school, after school program, bus rides. Oh those bus rides, I am so uneasy of those!
Hopefully it will be an uneventful week!

No weight gain yet

We went to Children's for a follow up appointment from Jen's surgery yesterday. She did so well, and was patient with the nurses and doctor. They weighed her and were surprised she hadn't gained any weight yet. It had been 10 days since surgery. I really wasn't thinking it was going to pack on quick anyways. Now we will talk to nutrition to add more calories. We really can't do more volume of formula, she barely is accepting what she gets. The doctor said because of her delayed gastric emptying issues, the feeding may very well have to remain very slow. The site looks good and they ordered other supplies we need on a regular basis. This is all taking alot to get use to. At night I am so preoccupied with her feedings, meds, etc.. When I come back downstairs 2 hours later, everyone is going upstairs to bed, no family life these days.