Day 42 Fish Oil Study

 

We went to Mandarin United Methodist this morning and was asked to share in their Sunday School class that has been such a blessing to us.  It was really a blessing and we enjoyed being with everyone and felt surrounded by love & concern.  Then we joined them for their Christmas Cantata and it was beautiful.  It was a Celtic theme and Sam loved it!  He enjoyed it so much, he was enthralled the whole time. 

 

After lunch I went and stayed with Selah this afternoon.  I took her out by myself for the first time and really enjoyed it.  They have a small park on the campus of the rehab and we went there.  I wasn't nervous at all with her by myself.  The weather is beautiful and warm (so sorry to my northern friends!!)   She did not have any therapy today so I did range of motion on all her limbs and was able to move her knees better than I ever have before.  This is her 2nd day on the new drug and in my opinion she seemed more aware.  One thing I noticed is, while I was talking to her nurse, Selah was looking away from me.  I began to rub her arm and she turned her eyes and head towards me!  I've never noticed her move quite like that when touched.  She also seemed to move her head back and to alot more than usual.  I am pretty realistic and try not to exaggerate anything but I really think I see a difference!  Maybe tomorrow it will be clearer if she is responding as that is the 3rd day and the day when most of the responses start from this med. 

 

She seems to be much better now that she is on meds for the infection she had.  We're not seeing as much guck coming out of her trach.  Hopefully she will be able to go back on the "speaking valve" tomorrow.  She seemed like she was moving her mouth today both sides of her mouth.  Sometimes we have just seen the muscles move on the right side but today I saw them move on both side and her tongue move but without having the speaking valve on, she can't make a noise. 

 

I know several folks have asked me to explain about where Selah is in her coma.  We had been told by our doctors in NY that she was in a level 3 or 4 coma based on the coma scale they use.  Here the doctors have said she is in a persistent vegetative coma (which is what Terry Shiva was in)  We had felt Selah had progressed beyond that stage.  I think it is hard for people to really put her in a certain box because of where she was before the accident.  So if I understand correctly, the doctors here ( or really the psychologist) feels she is out of the coma but in the PVS which is not a good thing....  who knows....

 

So please pray for us tomorrow as we work out more details for Selah.  We are not happy with several things including the plan to discharge her on Christmas Day!  We want her to be worked off the trach and we want to see much more therapy.  Please pray for Selah for that this new med will make her more alert daily. 

 

I had fun tonight at the church's Joy fellowship's Christmas party!  It was good to get out and get to know my new friends better:)

Day 41 Fish Oil Study

Selah was started on the new meds today.  She hasn't had any reaction to it and it usually takes about 3 days before it begins to affect a child.  We are hopeful that it will help her.

I had alot of errands to do and laundry so Jon stayed with her today.  She only got 30 minutes of PT this morning.  He took her outside and she seemed happy.  It was a beautiful warm day in Florida.  She is not having as many secretions which would make us think the antibiotics are working. 

Today was 4 months since the accident....I was just so sad.  I had gone to the mall to get my hair cut and to buy Jon a shirt for church but I didn't belong there.  Everyone was so happy but my heart is so sad.  I just feel like we had it all and lost so much 4 months ago.   Those 3 months we had at home with the girls were the most absolute happiest days of my life.  I was content with my life, I had my boys and now these wonderful little girls.   I enjoyed every moment of those months.  Several times I can remember telling Jon that I had never been happier in my life....  right now that happiness feels far away. 

Grief has come in waves over these past 4 months, intermingled with hope.  It is a hard place to be at.  Tonight my heart is heavy, I'm worried and I certainly am not in the "holiday" mood.  Having other children, makes me have to push through the feelings but it is hard. 

I don't usually ask for prayer but I'm feeling very overwhelmed.  Physically I've had some weird aches/pains and my neck is so tight I can't move it but in one direction by the end of the day.  I realize our bodies are affected by stress.  Throughout today, I've had to remind myself "do not fear", some days are harder than others and this is definitely one of those days.  I also find that when I'm not with Selah I worry more about the future.  When I'm not with her it is easier to think about the problems and challenges ahead.  When I am with her, it's just Selah and the challenges don't seem as bad. 

Watching the news is beyond heartbreaking.... life is so precious, our kids are so very precious, we don't know what lies ahead....love your family....

Heaven today

 

Credit: painting by John Lautermilch

 

So sad......praying for the families....

 

 

 

Day 40 fish oil study

Our first full day in Florida.  We went with Selah to all her therapies.  She certainly was "off" again.  She had thick green guck coming out of the trach and was still on oxygen.  the culture came back positive and now she is on antibiotics.  It bothers me that this was not noticed until we got here and I started pointing things out to the staff.   Obviously she is not doing all the things she normally does but we did see her do one new thing.  When quickly moved to her right side ( to mimic a fall) she does startle and reacts in an alarmed way. 

We had a long conference with our main doctor and staff to get clarity on some issues.  Our main concern is that she gets rehabilitated, and gets as much services as possible while she is here.  She was placed in a 2 week "evaluation program"  That is not exactly what we agreed on during the conference call we had.  We did agree to start with that with the belief that reasonable goals would be set and achieved and she would meet the requirements for the insurance to keep her here.  Once we got here, it seemed that only the two week evaluation program was being considered for her.  There is definitely a difference in opinions between us and them.  It was explained to us that her brain is slowly healing and that no therapy would help her get better any quicker.  Therefore rehab won't do much for her at this time.   That is NOT our opinion nor is it the opinion of various therapists we have had over the years for Sam.  (in fact most of the time I've felt that Sam had been pushed too hard at times) 

I am not sure what is going to happen.  We do get some positive feelings here and I think if she were higher functioning they would give her more but they don't because of her lower functioning ability.  That bothers me.   We did like the doctor's approach to the meds, she is interested in taking her off of as much as possible that could give her sedation!  I'm thrilled with that and all for it!  Also tomorrow she will be started on a new drug called Amantadine this is a drug that seems to help children with brain injuries.  In a study 63% of the children saw significant changes within 3 days.  The changes included increased alertness, initiations and verbalization and decreased agitation.  Please pray that this will work significantly for Selah without any bad side affects!!!!!!!!!!

In my opinion, the outlook for Selah by the staff here is not good.  They seem to think she will have increased problems with the spacity (stiffness) and may need a pump placed inside to give her continuous meds to combat the stiffness as well as other issues.  Although they are very respectful and pharse their statements gently, it is depressing.  They tend to point out the negatives and not the positives.  We are realistic, please do not get me wrong- I am the Queen of Realism but we also have hope.  I told them in our meeting that we have seen how far she has come, without any regression (until now) and that only gives us hope for the future. 

My philosophy as a parent of a child with disabilities is to give the child as much therapy as possible and work the body, which in turn stimulates the brain.  I've been told that by other therapists and doctors.  I've done that with Sam and if you know us, you know how far Sam has come, much farther than anyone ever thought he would.   This philosophy that they are sharing with us goes against my gut feelings and everything I've been told for the past almost 9 years. 

There is not alot of options for us to be honest.  Our insurances will only cover so much and obviously we can't afford to just go anywhere we want to get therapy.  If you have any real suggestions, or if you are a millionaire and would like to pay her therapy (lol) , please feel free to share with me.  Believe me, if there were any real options to go to after here, I would be doing them.

I'm confident in God tonight, He has led us these past 19 weeks and He will continue to work things out for Selah.  If you know me, you know I'm not naturally "at peace" with things if I don't agree with them.  I will continue to advocate for Selah and I believe I know what is best for her and I will go with my gut instinct about things.  Please pray that she will respond more and that they will see the potential in Selah, not just the negatives.  Pray that the staff will see our commitment to bring Selah back as far as possible and want to work with us in a stronger more pro-active way.  Pray that this new medicine will work mightily in her brain!  And that she will 100% tolerate the decrease in some of the other meds and this new one being added with no side effects.  This has not been the easiest day for us.  Jon is sick and feels down, which is not how he usually is either.   We have so much responsibility on us, it is easy to feel alone.

The other kids had a great time today in our hotel suite, they fixed lunch and watched tv:)  They called us to tell us what all they were doing. they are loving it here!  (but they miss their RMH friends as do we!  The hotel is wonderful but we do miss the interaction with our friends! But are loving the privacy!!!! )

Day 39 fish OIl (and day 1 for Sarah!) We're in Jax!

So we finally made it here!  We began wondering if Florida had moved or something, it seemed like such a long drive. 

We went straight to see Selah.  She has had her Aunt Val with her to take care of her and she was relaxed when we got there.  Funny thing is we could smell her down the hall....39 days of fish oil has quite the brimy smell:)  Our sweet little Mermaid:)

She seemed to have a lot of guck coming out of the trache, it was actually bubbling out!  The color was greenish and it worried me.  Evidently she has had that since she got there and everyone thought it was her "normal".  As soon as I said she had never had anything like that, even when she was sick a couple of weeks ago, things started moving.  The respitor therapist came and did an xray and a culture of it.  Also right after we got there, her oxygen level dropped to the low 90's which really scared me.  Never has she had that happen!  So she was put on a little supplemental oxygen for tonight just to make it easy on her.  (just got an update from Val and her chest xray was clear, still waiting for the culture to come back)

The Rehab is beautiful and her room is huge!  It actually looks like a spa:)  the staff was very responsive to us and it's been like that for Valerie too.  We will meet all the doctors and therapists tomorrow and have some meetings.  We are looking forward to it!

We met our new friend in the parking lot of the hospital and he gave us the directions to our hotel and the keys along with some goodies!  When we got to the hotel.....we were FLOORED!!  Two bedrooms and a bath, living room and kitchen area!  The whole place was decorated for Christmas, including a live tree!!!  The cupboards were filled with our favorite goodies and so was the fridge!  Thank you so much Mandarin United Methodist!  We are so grateful to your kindnesses to us!!!!!   After we unpacked (what a job-it seemed like my brain was mush!)  we ate and it was just so nice not to have to run anywhere to get something to eat!  What a blessing to our family.  The boys were just amazed that someone would do something like this for us!  They were jumping around with happiness at every new discovery:)  It was cute, everyone was tired but that woke us all up for awhile:)

So we are all about to fall out, Jon is really sick, he actually took some medicine so you know he is sick!  Steve feels better, both little ones have runny noses/coughing...me and Shad are still ok! We 're going to get up tomorrow and start this new phase of Selah's recovery.  Please pray for her that she will respond more and more each day! 

BTW, Dr Sears sent us some fish oil for us to use including liquid fish oil for the little ones.  Since we have a fridge, we opened it tonight and gave some to Sarah in applesauce.  She took it and didn't seem to mind it!  I'm curious to see what affect it has on her.  She is so very delayed, much like a 3 or 4 month old....  Now if we can just trick Sam. but that might be harder to do!   Also today I thought we should try and get Sarah into the out patient therapy here.  I feel like we "wasted" the last 4 months for her.  If we would have known how long we were going to be in NY, we would have gotten Sarah into therapy there.  She doesn't walk and her feet/legs turn in.  I had taken her for PT, OT, and speech evaluations before we left for NY and I had everything ready for all of them to start therapy when we got home....  since she spent all her time "bed ridden" tied to a bed, she could only lift her head a little and roll when we got to her.  Now she pulls herself up and stands by the couch, or in the crib....but she has no idea of how to walk, she puts one foot on top of the other.  So maybe we can get her started soon here and work with her also.  I called our doctor and they have already sent all the paperwork needed for her to get started!  Hopefully we can get a date tomorrow for Sarah to get started in therapy.

Day 38 Fish Oil Study~ I feel like traveling on......

Selah had all our evaluations today.  I don't know that she did as well as normal as she seems stressed out but I think that is good, as it may keep her goals more manageable and that is important as she has to meet goals to stay in rehab.  Her aunt is taking care of her and reminding them all of who Selah is!  I'm so thankful that Valerie is with her, I'd be a mess if she were there by herself!

We will be there by early afternoon and be there for some of her therapies and we will get to meet her new doctors and therapists and see what they have to say.  We are excited/anxious to know what they say....  We've stopped north of Charlotte NC and are staying at a great hotel thanks to our friends, calling us and surprising us with a reservation:) 

On our way up to Rochester, we stopped in Mt Ariy NC, Andy Griffin's  hometown and had a fun day.  We took some really cute pictures of the kids that day, it was a good time.  Driving past that exit tonight, just broke my heart.  I started bawling, remembering that day.  All I could think is "if only I could turn back time"  Oh God, if we had only known what was before us..... 

Don't get me wrong, I'm thankful for how far Selah has come, but she has so far to go to be where she was...will that happen?  We just don't know.  Today I have had to remind myself again..."do not fear"   Long road trips give you a lot of time to think....the future is scary...so many unknowns

Please pray for Selah....pray that she comes all the way back to us!

 

the kids in the Mayberry Jail  (Selah in orange, Sam, Shad and Steve holding Sarah)

 

Sam in bed!  He didn't want to get up this morning

 

Sam on the trip listening to the bear reading "twas the night before Christmas"  for hundreds of miles!!!!

The Clanton Family Heads Back To Florida

The Clanton Family Heads Back To Florida

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