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.

Our new routine, a challenge to say the least

Jen has been going so so good this past week. We are settling into our new routine too. Our day starts about 30 minutes earlier than usual and ends a lot later than we are use to. It is a challenge. We have 1/2 her meds going through the tube, and the rest she swallows. She gets 2 feeds during the day which each take an hour, and one at night before bed. The one before bed takes 2 hours to run. She is tired and not wanting to be in her chair that late at night. This means she is in her room in bed. Sounds easy enough, but she has to be propped up at least 30 degrees and stay there. Anyone that knows Jen well, knows when she is in bed, she moves constantly on her back in a circle clockwise. I tried the other night to do it after she fell asleep, as she doesn't move around as much, but she won't sleep propped up on pillows, she needs to be lying flat, no pillow rolled on her side scrunched in a ball. SO - that didn't work. While it is running, one of us is in there with her, keeping her propped up surrounded by her pillows. She is funny, all of a sudden with quick force, she swings her legs and pivots around off the pillow. The tube gets caught up in her moving body, the bells ring because the feed shut off and the IV pole tips around, and she is happy as can be. This is all when I was right with her! It is a challenge to say the least for 2 hours! She is still getting use to it all and so are we, she needs the nutrition, but it is time consuming. I look at it like this, I thank goodness she has the strength and the ability to swing those legs, move her body and make herself comfortable, after all she is in bed, she should be comfy, BUT there is never enough time in the day to get everything done, and now, well like I said we are settling in.