A big Scare!

 

 

the first time since the accident that all five of my kids have been outside playing together......

 

Florida is wonderful from October-April:)  We'll be outside every day!

 

 

 

Selah sat with me on the big swing and we swung for a long time

 

 

 

 

 

 

Selah had an appointment with Orthopedics today and it went GREAT!  The doctor was pleased with her legs/ankles and feet!  In fact she only has to wear her leg braces for 12 hours a day now instead of 23 hours a day!  she had surgery in March to correct the damage done to her legs/feet and ankles after the accident.  they drew up terribly but they look great now!  She has no more drawing up and they don't expect anymore issues with it!!!    We talked about her hands/wrists and he was actually glad at the way they have drawn up.  It is easily correctable and much different than most kids like her.  Her thumb is stiff but we are going to put something like a bike handle in it at night just to help round it out.  He said she will be fine.   

 

I had to do a lot of calling today, getting some of Selah's meds straighten out.  Being the mom of special needs kids can be complicated in a way that no one would understand UNLESS they are a parent of a SN child or a caregiver for a chronically ill person....all the hoops and phone calls....just to try and have everything run smooth for your loved one.   Sometimes I feel like my head is going to explode!   NOTHING absolutely NOTHING is easy....... 

We had a great time outside as you can tell.  We were out for 2 hours and the kids were all HAPPY:)  Love our weather! 

We all came back inside and I started cooking Shrimp Jambalaya and black beans and cornbread.  it is one dish that really doesn't blend up good so Steve was feeding Sarah something else for me. (she usually eats what we eat, I just puree it)   I had made her a drink of Pedisure/ice cream/ strawberries for her dessert.  I had blended it and it was thick like a custard.  Well all of a sudden he yelled "Sarah is choking"  I turned and screamed for our nurse and he ran in right when I got over to her.  As he is coming down the hall he yelled to turn her upside down to Steve and then he grabbed her and did the Heimlich.....   One of the strawberries hadn't completely been pureed.....   As soon as he turned her right side up, she sat on the floor and opened her mouth for more....   It didn't seem to frighten her, me?  I'm still shook up about it.  We love our day nurse Aaron a lot anyhow but now........   we are eternally grateful to him.   I've had CPR but he did everything so quick and steady.  thank God we had a nurse here today!

Sarah was shoveled food in her mouth in the orphanage.  She doesn't know how to chew, there is NOTHING wrong with her mouth but since she was feed for 5.5 years by having food shoveled down her throat, she can't seem to learn to chew nor does she have any desire to do so.   She learns other things so easily, and LOVES food....you'd think she'd catch on but she doesn't.  She has a therapist who is working with her weekly but the only thing she has learned so far is to drink from a straw.  This is the first time she has ever choked on something and I feel horrible!!!!   I've used the Magic Bullet now ever since she has been home and it usually purees food perfectly but maybe it is getting dull since it is in use several times a day!  I also usually stir things just to make sure everything is the right consistency.   This little piece just was hiding.   I am so very grateful for our nurse and so thankful to God that everything is ok!!!!  And I'm glad she isn't upset by it. 

It amazes me how life can change in an instant...we'd all been outside playing, came in and we could have had a tragedy happen.....Life is precious  and kind of scary too!  


Whew.....I'm just ready to go to bed and pull the covers up over my head!!!!!!!  Steve wants to go take a CPR class and I think I'm ready to renew one too! 

Sam used to stop breathing when he was little, it was beyond awful.....the first year of his life was filled with times of me having to do CPR and once our neighbor had to do it for him....    I do NOT know how we got through that first year!   Today reminded me of that year......my kids age me!!!!!! 

So we are thankful tonight that all is well with our baby girl!

Well we have decided we should take Selah back to Hyperbaric  Oxygen Therapy  (HBOT)  We ( us, her nurses and even one doctor!)  feel that there has been an improvement in her.

What we have seen:
1. tongue control.  she holds her tongue in her mouth always ( she keeps her mouth open but most folks who have a trach do that even if they have mouth control)  she moves her tongue around and  does some things that the ST told us were very important (moves her tongue when touched etc...)

2. she turns her head towards someone talking to her  she rarely did this before.  Every since the HBOT we have had many folks remark on this. 

3.   she has a little more head control and moves it much more   we all agree on this.

4.  she seems more alert    this is hard to "prove" but we all feel like this.

5.  she no longer tests positive for MRSA!!!!!!!!!   out of curiosity the clinic asked that we have her tested for MRSA again (she has been positive since the accident)   Well we did and it was negative for it....  she still tests a low positive for the sudamounia...(a trach infection and NO I didn't spell it right, I have no idea how to spell it)   Everyone was wondering if the HBOT would make a difference in the MRSA and it seems like it did!  MRSA doesn't usually go away once it is colonized like it was in Selah.  Everyone is finding this "interesting" 


Some of these things are subjective BUT the tongue movement is not, she started it on day 10 of HBOT and has not stopped it.  We were worried that it was an abnormal movement but no one seems to think that thank God!

We are grateful they have agreed to give us the same deal they did last time:)  HBOT is expensive and not covered by insurance but we feel that it has helped her and may help her even more so it is worth it to us. 

Please be in prayer for Selah as we get ready to start next Friday Nov 1!   She did great with the HBOT last time, no issues and we are praying it will be the same this time.  Pray that God will use this to help heal Selah.  I figure God made oxygen and gave this idea to someone.....  it is about as natural of a treatment as you could do for someone.....  I was encouraged by one of our doctors ( I won't "out" him on here) but he told me he has seen some of his kids really helped by HBOT even tho it is not "medically recognized"   We think there has been some small significant and lasting changes to Selah because of the HBOT.....maybe there will be more!

Ok everyone have a safe and good night....I'm fighting taking one of my "happy pills".  going to try and relax.....go to sleep if I can!  I maybe a bit stressed out, but I am so thankful my little Sarah is ok and playing happily on the floor in the living room.   Her food will be checked totally from now on and I'll make sure nothing like that ever happens again!!!!!