Teething, Therapy and other Thoughts

March 30, 2011

Teething is the newest phase in Josie’s life right now!  Sometimes we forget the stages of “normal” babies and things like teething catch us off guard.  This has been a good stage for Josie though as she is now sticking her fingers in her mouth in order to sooth her inflamed gums.  The fact that she allows her own fingers in her mouth without gagging herself is monumental.  She really likes her index finger and has been toying with her thumb the past few days; we never thought we would appreciate a child sucking on her own fingers so much!

We may be turning a corner with Josie starting to eat – this past week she has tolerated tastes of applesauce, bananas and pears.  She has gagged a bit, but has learned to swallow the gags and once she does that, she seems pretty proud of herself and breaks out in smiles.  It is a very slow process, but we are encouraged with a little progress.  Josie is getting Speech therapy once a week to help work on this area of development. 

We met with Josie’s Neuro-Development PA (Physicians Assistant) and she suggested that we go ahead with a g-tube (tube that is surgically placed in her stomach) so that we can get the tube out of her nose and that will hopefully help with the reflux and also will help the progress of eating and swallowing.  Right now the consultation with those surgeons will not be until April 28 and the surgery will be pending the MRI results.  Until then, we have been blessed with some fun and colorful tape to use on Josie’s face.  Since she has to have the feeding tube, we might as well make it a little bit pretty and fun!

Josie has also started outpatient Physical therapy once a week.  We have only had one session and by the end of it Josie was so exhausted that she fell asleep sitting up.  We are going to PT today and in the first visit the therapist mentioned using special tape on her left arm to try and “wake up” her muscles and she also mentioned getting braces for her legs that would help her when she is in the standing position.  Not sure if all of that will happen today, but I am very encouraged by this therapist and that she wants to get Josie to go as far as her body will let her go.

During the week we also have an “Early On” therapist that comes to our house.  Early On is a program through the school districts that helps kids like Josie.  Josie loves “Miss Liz” and has seemed to make progress each week that she has had this therapy.  Liz works with her on PT, OT and speech from both a developmental and educational standpoint. 

We have been weaning Josie’s pain meds and she is now off both of the meds she was addicted to (Morphine and Ativan) – Praise God!  That also means we have dropped 6 syringes of medicine a day!  Josie met with her Neurologist and is now being weaned off of one of her seizure medicines too.  This will be a very slow wean, to drop just the middle of the day dose, it will take 7 weeks.  Regardless of how long it takes, we are pleased that she is being weaned from this medicine.

Based on the appointment with the Neurologist, Josie will have an EEG in May, to monitor any seizure or other neurological activity.  This is a routine test for brain trauma patients.

On April 25, Josie will have an MRI.  By this time, she will have had 2½  rounds of this new chemotherapy.  This image will tell us if the chemo is shrinking the tumor that has started growing into the left hemisphere of her brain.  If the chemo has worked, then our Oncologist has given the okay to take a little break in order for Josie to get the g-tube in her stomach.  If the results are not favorable and the chemo appears to not be working, then we are at the end of our options for chemotherapy.  So this MRI is a big deal and it is with quivering knees we approach this timeframe.  We are praying continuously for a miracle and for God to heal our Josie.  Some days we almost forget how fine a line we are walking with her because she seems to be doing so well from an outward appearance.  Things like this MRI bring us back to the reality of what is going on in our little girls head and brings us to our knees before our magnificent God. 

On May 1^st, we are taking a walk against pediatric cancer.  There is an 8K run/5K walk that we have signed up to walk.  All proceeds raised from the walk will stay here in west Michigan for research for pediatric cancer.  The top 2 pediatric cancers are brain tumors/cancer and leukemia.  If anyone is interested in doing this walk with us, you can register at the following website – the early bird registration is done, but you can still register for the race.

www.milansmiraclerun.com

Finally, we are planning a “Birthday Bash” for Josie on July 9 from 2pm-5pm.  It will be an open house at our church and everyone is invited.  We will send something out a little closer to that timeframe, but we wanted to start getting the word out a little early.   Feel free to spread the word to others that would be interested in coming, but might not have facebook or get this email update.  We know many of you are too far away to come, but please know that we appreciate everyone that has supported, prayed and just been with us through this year of Josie’s life.  We are looking forward to a fun time of celebrating Josie and maybe, just maybe by that time, she will be able to try some cake!

Blessings,

Marc & Darcia

Doctor Appointments...

8/7/10 Doctor Apt Updates

We have been home with Josie now for a little over a week. We have had some really good days and some not so good days. Thankfully we have had several friends and family that have helped out this week in so many ways - watching the girls, meals and lots of support.

Doctor appointments started on Tuesday of this week - starting with drawing labs for the following day’s appointments. Wednesday was Josie's Neurology appointment - all went well and they are going to keep Josie on the same seizure meds for now. One of the meds elevates her liver levels, but they are not too concerned at this point - they don't want to mess with changing her meds until she has had it in her system a while longer. They are keeping a close eye on this liver level, which puts our minds at ease a bit.

On Thursday, it was supposed to be a day that I didn't need to go out and about with Josie and I was hoping to get a little needed rest while some friends took the girls for the afternoon. Instead, Josie has started this gagging/throwing up thing that is very disconcerting to me, so I called the Pediatrician and they wanted me to come in to the office with her. That visit ended with me taking Josie to Radiology to get an X-ray of her belly to make sure her feeding tube was still in the right place. After 2-3 hours later, the result came back that it was positioned correctly and I went home with no answer to her throwing up problem.

Friday...I should have known it was going to be one of those days when right from the start, our dog knocked my full cup of coffee off the coffee table. (anyone want a 9 year old dog???)

Josie's first appointment was at the Peds Clinic for our "first" follow-upvisit after her hospital stay. This apppointment was very good and we changed a medication for reflux (possibly the throwing up issue) and then after much screaming from Josie, the nurses got her feeding tube retaped. Unfortunately, because the appointment went much longer than anticipated, we were almost an hour late for Josie's speech therapy appointment, so they told me that we would have to reschedule for next week. I was devastated - I was really looking forward to this appointment and then to not get to meet with the therapist, pretty much shut me down emotionally. I struggled incredibly with this and felt crushed, but there was nothing I could do about it nor did I have any control over being late.

On the way home, I cried and felt drained, little did I know that this was only the beginning of a draining day. As I got home, I opened the van door and started to get Josie's carseat out - what I didn't realize is that the feeding tube cord was stuck on the opposite side of the van seat. The action of lifting the carseat out and the cord catching was enough to rip poor Josie's feeding tube out. I immediately fell apart. Thankfully I got a hold of Marc and gave him the number to call and he took it from there. Marc came home so that he and I could take Josie back to the hospital (this time to the ER) for her feeding tube to be replaced. After talking to the PA that inserted the new tube, he said that the process of the tube coming out didn't hurt her and that things like that just happen. The thing that probably hurt more was the tape ripping off of her face (poor thing!).

Josie had a very fussy rest of the day and slept a lot, which means she didn't sleep very well in the night. *yawn* I think she was skidish this morning about being picked up or handled since yesterday was so traumatic, but she finally settled down and had a good 2 hour wake time this morning and is napping right now.

Keep praying for her Josie and for us - we are feeling somewhat weary - tired from not sleeping well and also feeling somewhat emotionally drained. We really need to get Josie eating (anyone have tips or tricks) so that the feeding tube can come out for good.

well...this has been a long post and lots of information, but we wanted to let you know where we are at with Josie.

We are just waiting on time for what comes next - we have realized that we can only take it one day at a time and keep walking in faith - which means sometimes we take steps without knowing what is coming next.

Blessings -
Marc & Darcia