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.

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.

Jen is doing great!

Jen was admitted Thursday to prepare her for surgery Friday. Everything went as planned, so nice when that happens, as it rarely is easy for Jen anytime. The best case scenario happened for the procedure for the feeding tube. She was discharged late Sunday afternoon and has been in great spirits. I am so proud of her. As usual I talked to her about it all before/during/after and she was o.k.. This is when being able to read her eyes is so important. She was unusually quiet the entire time, and I knew she was nervous. Usually her tones in her voice help us figure out what she needs, but when she is so quiet, her gaze in her eyes tell the story. She really amazed me all weekend long of being so tolerant of so many strangers. The staff was incredible with her and us. It is unfortunate she needed to have a g-tube placed, but at least the experience was as pleasant as possible.
Yesterday was a day to recoup, she was very relaxed and patient with me, as if I checked her site once, I checked it a 1000 times.
Jen just left on the bus to school. She is packed up with loads of supplies and I made sure to send her favorite foods, snacks. I am headed to work, probably the best place for me to be, to get my mind off this past weekend. Hoping Jen has a good day, I am sure she will, she loves school and everyone there is so caring and experienced.

One step forward, many steps back

Jen had another good week of school! She missed a 1/2 day this week for her physical appointment, but other than that, she has been there, although her seizures are very active and seem to be increasingly worse in length and severity. We spoke to the doctor today, she adjusted one of her medicines. I hope this gives Jen some relief. As I have said before her seizures control her moods which control her day. I had to get her from school again yesterday as they were so bad, the school didn't want her on the bus, and neither did we. Every time she gets on that bus, I time 50 minutes, praying she has a safe ride without seizures. She is safe at school and safe at home, we all know how to care for her, but when she is on the bus, as nice as the monitor and driver are, they are not able to help her, which means if she had cluster seizures or lengthly seizure, they will have to call 911. I feel like its a matter of time before it happens, and really don't like the feeling at all!! Her seizures are getting worse, and the bus ride is too long, but for now, its the only solution.

One week from today Jen will be at the hospital waiting surgery for the next morning. Once the feeding tube is placed and we get her better nutrition wise, we will pursue the vagal nerve stimulator to help control her seizures. We are kind of planning on this working, I hope it does, as what else is there to try? Always something!

Two weeks!!! You did it Jen!!

Jen has made it to school for a solid two weeks without missing anytime! Finally back on track with her regular schedule. She does so much better with her routine in place. Of course next week she has an appointment and will miss a day and then the next week she goes into the hospital and then a week after that is school vacation week. To look on the positive side, March was better than February for her. Hopefully April will bring good health to her along with smiles and giggles! Hopefully.....

So far so good this week!

Jen is having a great week! Very few seizures and seems to be happy and comfortable. When Jen is good, I am good. She is eating great but still drinking very little. She will go into the hospital April 9, and the g-tube surgery will be April 10th. Easter weekend. Hoping it will be as easy as the doctors seem to believe. It will be nice to get this behind her and on the way to better nutrition!

A week with no appointments!

We have NO APPOINTMENTS scheduled. I am hoping with getting Jen back into a regular school routine, just might relieve some stress for her, which hopefully will result in fewer seizures, just maybe..... Here's to a good week Jen!

Seizures, no one should have to suffer with them!

Poor Jen can't catch a break with these seizures. Today she had 4 sets of cluster seizures. They really effect her day. The last set was around 5, right before she was headed home from school. So the total today was 14 seizures!! Tomorrow we go for lab work to check levels, although there really is nothing the doctors can do for her now.
Her meds are maxed out pretty much. The next step would be the Vagal Nerve stimulator. But once again, her surgery for the g-tube has to come first. We have waited another week, no date set yet. I don't really understand it, the doctors say she must have a feeding tube, as she isn't maintaining her weight, but no one is in any hurry to set a date for the surgery, we will wait til Monday and call again. I said to the secretary today, this is not elective surgery we can wait for, it is surgery for a feeding tube, the sooner the better, my little girl is getting tinier by the day. So it looks like mid April at this point, hopefully she will stay healthy!!

CDKL5 controls our life

Jen left for school happy this morning, she was out of school yesterday for an appointment, and I thought she would make it through the day. Unfortunately Jen had a terrible day of seizures and the nurse wanted me to pick her up instead of taking the bus at 5:30. Sounds easy, but this is getting to be quite a routine. I need to find someone to travel with me (at least 2 hours round-trip), change plans, rearrange schedules, not have dinner ready, etc.
Jen's day effects everyone's day in the family. Everyone's.....
We all get through it, but Jen's seizures are uncontrolled which means our family's life is uncontrolled. It would be nice to get everything back in control!

Whats in a diagnosis?

So I get into a conversation with someone I have worked with for over a year about our kids today. In the middle of the conversation she asked about my youngest daughter, how old, what school, etc.... well how do I begin? 14, and then the converstaion goes astray as she is amazed I have a child with severe special needs. I hear - she doesn't walk? she doesn't talk? does she understand you? she doesn't feed herself? 100% dependent? really you have to help her with everything? everything? can she sit up? can she read? She has real seizures almost every day? Does she take any medication? This person is a sweetheart, and truly wanting to know about Jennifer. Then she says, how do you do it? take care of her and work? I smiled. I am thinking in my own head, of course I take care of her, and work, take care of a house, my other two kids, dog, cat, and just everyday life.. BUT YOU ARE ALWAYS SO HAPPY - you would never know you have a child like that to take care of. Well, at least when I am at work, I come across happy and pleasant, I really try to keep my personal life out of work, my personal life consumes me, Jennifer consumes me. I love being Jen's mom, but at work its nice to be known as Gayle, its like a getaway for me in a way. The days I am not at work lately have been spent at appointments, then you bet, I am Jen's MOM!!!

So the conversation turns to What is her diagnosis? Well if it was simple to say or explain, I would, but what am I suppose to say, Atypical Rett Syndrome-CDKL5 variant-early onset seizures. That is a long name of what the diagnosis is, but it means absolutely nothing except to other families that unfortunately have the same diagnosis. To the average person inquiring, how do you describe it, so I try.
Rett Syndrome is the most severe form of autism in girls... o.k., well if that is what Jen had, that might not be so hard - explain Rett Syndrome ( I can do that after all these years) CDKL5 - that means nothing by itself. Jen has so so many criteria to be diagnosed as Rett Syndrome, but does not fit Jen at all. She is so much more severe than a typical Rett Syndrome girl. I stop there and say how beautiful she is, as if I were to continue it would be Jen has been diagnosed with mental retardation and refractory epilepsy, she has severe scoliosis, she does not respond consistently to anyone or anything, yes she responds but not consistently, she does not eye gaze like the other girls, she will gaze but only if it is a novel toy,food etc. being brought into her vision. I couldn't descibe her like that, no way...
So Rett syndrome alone is not the correct description. If I describe a girl with Rett, I am not describing Jen, one day we will have a syndrome to go by, but today the closest is Atypical Rett Syndrome - CDKL5 variant-early onset seizures.

My preference of describing Jen is a beautiful red head with a feisty personality, that is able to get her point across without one word. She has a smile and giggle that will melt your heart. She has endured more tests than any human should ever experience and a little body that challenges her each and every day. Her daily seizures will control her mood, ability and overall strength for the day. She is much happier when spoken to and handled gently, and has unconditional love for anyone that will give her the time of day and will absolutely listen to anyone that sings to her. Her greatest love is food and music! She is my teacher. She has given me an education I never intended on having, she has taught me to speak up for her best interests and she has taught me patience beyond belief. That is the real Jen.....

Its just routine

Appointments. So many of them. Lost days of school, work, regular life. Jen is such a trooper through them all. She is out again today and tomorrow, 3 appointments. She has come such a long way tolerating people touching her. Even going back a couple years ago, everytime the doctors would touch her she would rebel making the appointments difficult. Now she doesn't rebel, usually. She sits in the car looking out the window, usually looking very content for the long ride. She waits in the waiting room, will go through x-rays, ultrasounds, lab draws, poking and prodding,
and as long as I am by her side telling her it is all o.k., she is o.k.
I question why the change, it is huge, sometimes we think she has just given into it all, sometimes I just think it is all she knows, we all get use to routine, no matter what it might be. Well, headed out for our routine ride to the hospital.

Sometimes CDKL5 just HITS me hard!!

So as I said in the last post we had a day full of appointments, which of course meant sitting in the waiting rooms, well waiting. We came out of one appointment and the very large waiting room was pretty much full, the only spot to sit and fit Jen's chair was by the chalkboard and the little table full of kids with a hospital volunteer coloring and chatting. I was sad anyway from the appointment we just finished. The volunteer seemed to recruit kids, inviting them to the table. Not a glance, not hello to Jen. So of course now I had something to do while we waited. There were other kids like Jen there, the waiting room is big and we were at a childrens hopsital. She didn't make any contact with them either. I know my daughter is different and yes very disabled. But i guess too scarey to say hello to, I didn't expect her to ask her to color, but acknowledgement, absolutely, it was like she made us invisible. Jen was sitting quietly with me, which is like I said before, very different, for years I sat in waiting rooms trying to quiet her, feed her, anything to quiet her as she has such a loud moaning voice. But this day, she was happy, smiling, quiet looking around. Again I don't know what she is aware of, I only hope she doesn't realize too that no one except for another parent with a boy in a wheelchair, spoke to her in that waiting room, not even the pediatric volunteer. So much has been taken away from Jen with CDKL5, but it is sad society still is so afraid of a person in a wheelchair, so sad.

When did she change?

I have taken Jen to every single medical appointment she has ever had. As I am speaking with the doctors, she "talks" louder than we do, very disrupting, and doctors know if they acknowledge her voice, she will settle a few minutes, we can talk, then repeat the process to get through an appointment. The ones with no patience for it, well they aren't her doctors anymore. We know she is listening and contributing to the conversation actually about her. YES it is aggravating sometimes, but she has a right to speak, and actually there is no way to stop her from "talking" anyway.
Things have changed the last couple of months. We have had a load of appointments this Winter, she has basically been getting quieter each time. This last Friday, we had 2 appointments scheduled, which turned out to be 4 appointments by the time we were done... She was so quiet. The first was a serious appointment, I needed the information and I told her going in, "Jen I need to talk to the doctor, please be patient", see I always tell her the what/where/and who every step of the way. I do believe she gets it. Maybe because appointments are routine for her,and she needs structure, basically the same thing happens physically at most appts. for her,so I guess it is structured, routine. Even the doctor commented on how quiet she was, she smiled, so proud of herself. This appointment was full of stress for me, maybe she knew her "talking" over us was not going to help....just maybe...thanks Jen.

If only you could tell us what is wrong.

Oh Jen, I think this is the hardest part for us. Something is wrong, she is hurting and can't tell us what is hurting her. It started yesterday, a call from school, she has a low grade fever and keeps crying out in pain, big tears, then settles, then starts up again. I picked her up from school again, and couldn't figure out what was wrong. We brought her to the pediatrician, who did a thorough exam on her. He couldn't find anything wrong either. Said to watch her for another day and if not better to bring her to Boston. Today she stayed home, no fever and seems o.k.. She is not crying out in pain. What was it? we will never know, but hopefully whatever it was will not show up again....... If only she could tell us what is wrong. It is so hard to watch her cry and not be able to pinpoint the problem. At least she seems better tonight.

Jen likes ride from Mom instead of the bus

Well last night at 5:25 the school called saying Jen is having more seizures and they are not comfortable putting her on the bus in 5 minutes. She has a 50 minute bus ride and I agreed it wasn't a good mix to let her ride the bus. Ned and I met off the highway on his way home from work and detoured to Jen's school to get her. She had an o.k. night, and went to school this morning. She seemed fine, well by early afternoon, I received another call, more intense seizures one after another. I called the doctor, was on both cell and home phones with them both. If she had more the doctor said break the cycle with the medication. She asked if she was sick at all, "no" I answered. It was decided I was to pick her up from school again and not risk the bus ride. Well, after speaking to the school again, Jen has a fever, not high, but a fever. I made the trip and picked her up, and of course she only has her stroller for the weekend. Another story for another day.
I heard back from the GI doctor today. He wants Jen to be seen by a surgeon before scheduling her g-tube surgery, as she has had one in the past and it might just be more complicated than ususal. Of course, isn't that Jen's life? complicated?

No answer from Doctor brought us to a decision

Well, we went to see Endocrinology as recommended by Neurology and Gastroenterology. The question? Why is Jen not maintaining weight? No answers to be found, again.
So that brings us to a heart wrenching decision - a feeding tube. You see, Jen had a feeding tube in 1999, when she had her surgery. With the surgery, they said she needed one, as she wouldn't be able to completely eat by mouth. Jen proved them all wrong, and a year later, after not using it, they removed it, with letting us know that one day she will need it again. We were o.k. with that, as believing removing it gave her more freedom, and less chance of infections with a foreign object in her body. She had been doing great, eating everything and anything we gave her, her love of food is her biggest passion. So we were able to give her 8 1/2 years without a tube. What an accomplishment! I should be happy it has been so long. Well, I am so sad about this, its all I am thinking about this week, can't get it off my mind. Somehow this just feels like a kick in the head to me. When I think logically, I know she needs it, but it also me makes me feel like I failed her. I know I haven't. I have searched for answers, goodness knows we have been to all the specialists possible, but poor Jen. She will still be able to eat all she wants, she has not lost that ability, thank goodness. It will be just for supplementing her needs.
So the next call is to the GI, to update him about this last appointment, and my discussion with the nutritionist, and I guess schedule a date. ughhh.....

Reality

After talking to another mom online, I decided to add up Jen's seizures. I see the totals each day on the calendar, but never added them up monthly all together. Well, I just went back only 3 months, Jen has had approximately 152 seizures since Nov. 1.. Granted November was a horrible month for her, BUT 152 SEIZURES is just not acceptable. I don't need to look back any further. We see Neurology in 3 weeks, we need to change something....again...but what???

Another trip to the Emergency Room

On January 23rd, Jen had another awful day of seizures. They started on the bus, which is always a scare for me, continued through the morning, but were always outside the criteria for use of the Diastat at school. While I was on the phone with her school at 3:30, she began having more. They were able to break the cycle with the Diastat, but of course the EMT's were called and I met her in the ER once again. Poor Jen, I always wonder what goes through her mind during the seizures, but also with all the medical help, the ambulance ride, the ER doctors. All I can say is thank goodness her school staff is so reliable and the most caring people I know. Someone always goes with her and stays at least until I arrive. I always find someone to travel with me so she will be safe on the way home in the car, but this takes time, and seems like forever just to get to her to give her a hug.. I can't be with her all the time, but when I hear she is being sent to the hospital, I get this sinking feeling, praying she will be o.k. when I arrive. How many seizures can this child take? Once again, we arrived, took her home, and its like it never happened. Thank goodness

She was fine when she left for school

Jen is on her way home from school, early - they called at 2:30 saying she is so upset and fussing and has a lowgrade fever and needs to come home. (usually stays for the after school program til 5:30) The school suggested I call the bus co. to see if they could pick her up early. The bus company said yes and are on their way. I told them I could go but won't have her wheelchair for the long weekend. They had no problem going early, I don't like to ask for things like that. It is not a big deal to them evidently, but I feel funny asking.
For Jen's sake I hope the Motrin helps and it is a quick illness. She doesn't need any fevers, colds or anything that is going to keep her from eating and drinking. The school nurse said she had a couple seizures today too, ugh... poor Jen. To think we were on the fence of whether to send her or not today due to extremely low temperatures outside. I guess I should have listened to our instincts and kept her home. But I never thought she was the least bit sick or I never would have sent her. Well at least it is a long weekend and she can rest and hopefully feel better soon.

SHE SAID " MOM " !!

So this morning was another early start for us, as I needed to leave for work the second Jen left on the bus. We were up early and in the kitchen, I was of course talking to Jen as I was picking up. I said, "So Jen who do you think is going to get the award? " ( I was telling her why I needed to get to work early) She says "MOM" !!!! I almost dropped the dish I was holding. I said, say that again!!! She said "MOM" !! O.k. she got the biggest hug, and the tears were flowing.. she was so so aware this morning, I knew she was listening, smiling and giggling. I actually had "Jen" with me for a few minutes.. That was the best few minutes I have had in along time!! I LOVE HER VOICE WHEN SHE ACTUALLY SPEAKS!! If only it were more often, but today was going to be a good day no matter what, she spoke to me, she actually answered me! And she was right, I got the award.

While I was at work, I found out her bus was going to pick her up early from school due to the snow. I left work early. She got off the bus so happy and seemed so aware again. We were up in her room watching a movie and she all of a sudden rolled on her side and looked me right in the eyes. I said hi beautiful, she gave me a huge smile, giggled and rolled back over. She rarely lets our eyes meet, she always looks away.
Again, she was so aware and intentionally looked at me.

She is happy and smiling today, and do I dare say, so few seizures this week. I know this is the difference. When they are minimal, she is a different person, aware and more in our world. May this stage last, it feels so good for her to be in our world for a change.

A long day for Jen

The day started early today for both Jen and I, we left the house a little after 6am and didn't get to the hospital until 8:50. She was so good in the car. We met with the nutritionist and she went over Jen's diet, seems I was right, she takes in ALOT of calories, very few fluids and is very low on intake for calcium and Vitamin D. No surprise there. After numerous calls to verify supplements with her other specialists we now have clearance for a calcium enriched diet. We will see how she does, hasn't had any milk based things to drink, since she was 5, so it may take a bit.
So we have drinks, vitamins and a supplement added to the mix and we have about 5 weeks to work hard and get her gaining weight. Hope it works. If she can start gaining weight, maybe we can get with the original plan of the VNS for her seizures. Seems we take one step forward with one doctor, and two steps back with the next.
We also had labs and x-rays done today. Jen was so quiet all day, the nutritionist did not get the opportunity to meet the "real Jen" she didn't make a peep, not once, we actually had a conversation for over an hour. She made up for it at the lab though - she yelled, she cried, she was so so MAD!! I didn't blame her, she had enough!!
So after a day like that, we came home, cuddled up and watched her movie. She is happy to be home, with no one poking at her. I told her it is now the weekend, she can do what she wants for the next two days, I got such a smile from her!! On a good note, no appointments next week - none planned anyway!

A new day, a new chapter

Last night I received a call from Jen's GI doctor to discuss her latest lab work. Good news was her thyroid is fine and she does not have Celiac. Great news!!! Then he tells me she has Vitamin D deficiency, and it is very low. Low enough to need mega supplements for the next 6 weeks. Also along with that she will need to take Calcium supplements. Well in order to do that we have to contact her nephrologist as we were suppose to limit extra calcium due to her kidney stone she has had for 8 years!!! So when I think I am doing right by my daughter with one doctor, another thing pops up in another area. So this morning was spent leaving messages for her specialists in nephrology and neurology as we need clearance from both before the new meds are started. They both called today and will hear back tomorrow again from one. In the morning Jen and I will travel to Boston for her awaited nutrition appointment, more lab work due to the deficiency they now will test even more, and an x-ray for her bones. One doctor said today she needs to have a bone density scan now which I am sure will be scheduled soon too. So tomorrow we will start the vitamin D, learn more about nutrition to get her to gain some weight, and try to keep it on her, learn how bad her bones may be..... not looking forward to tomorrow, as it only means more medications, more regimens and more future appointments. Poor Jen, she can't catch a break these days, we have been so happy her seizures are settled lately, and all this gets added. Her attendance from school has been horrible, as mine at work has, she has so many appointments, and our calendar for Jan and Feb is loaded already! Well off to get Jen settled in bed so we can get up at 5:30 and be on the road by 6am. Fun Friday, huh?

HAPPY NEW YEAR!

Here is to a Happy New Year ! My wish for this year is that we all are healthy and safe!
Kristina is in Guatemala now, Ned left this morning in an ice storm to commute to work, and Katelyn, our new driver left a few hours later in the car to school.
Jen's body is challenging her everyday between seizures, medications, nutrition issues and her stiff body that doesn't move the way it should.
May this year bring our family less stress, health and happiness in all we try to accomplish!

December - the month went by so fast!!

I can't believe it has been a month since I have signed in. I keep thinking I need to update, but never seem to get to it. So in a nutshell here is the past month. Jen has been doing great with her seizures, do I dare even say it? Only a couple a day if that, and short in duration since the middle of December. The doctor still wants us to inquire about the Vagal Nerve Stimulator, and we do too, but we have to jump through a few hurdles with nutrition and GI before anyone will consider it. Jen's weight is still unsteady, we go to nutrition this week for a high calorie diet - I certainly know I can't feed her more in quantity, so we will see what they have in store for us. We will make all attempts before we have to go back with a feeding tube, which unfortunately we have had discussions about with the various doctors. In a couple weeks we see endocrinology which is another new department for Jen. Since the middle of December, Jen's white count has been low, due to medications, but also means we have to keep her away from crowds, anyone the least bit sick, etc.... how do you do that when we have to go to labs, hospitals and doctors offices? So far, so good thank goodness she is healthy!! So many specialists and so much time needed to make all the appointments and then actually get to them!! It is a constant challenge, I had to cancel one today which was 1 1/2 hours away and we had an ice storm with 2 hour delays for the schools. The appt couldn't be delayed time wise, so waiting for another date now. My calendars are a challenge, and with each appointment I make, means asking for yet another day off of work. Well off to enjoy my day with Jen, it is stormy and raw outside, maybe we can watch a movie...lol... oh Jen and her movies, at least she got alot of new ones for Christmas !!