One Tough Chiccy!

Another surgery under her belt and she came home 2 days later.  Wound is healing up pretty well and quicker than I expected.  So far the device is not helping with digestion - but surgeon said it takes about a month to get to full capacity.  For right now we are just watching and waiting!!!

inspiration

Dear Lord, thank You for choosing me to love a child with a special need. Help me to see the beauty in my child through Your eyes, as a marvelous creation, beautiful and full of potential. You’ve promised a purpose and a plan for my child. Your Word tells me that You use broken individuals to do amazing things for Your glory. Help me then, Lord, to be all that my child needs me to be, as I rely on Your strength to carry us through difficult days. In Jesus’ Name, Amen

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Disabled kids should get home care, lawsuits say

Home - Tri It Get Fit Triathlon

Home - Tri It Get Fit Triathlon

Registration for Tri Fit on Apr 21, 2012

imATHLETE | Temple Terrace Triathlon | Temple Terrace, Florida, USA | Apr 21, 2012

I can look at Megan and see that she has gained a little weight!  This thing is working.  My scale is possessed I think so I can not get her real weight but we moved up a size in diapers.  Her butt cheeks were sticking out.  I am so inspired by the success so far and can not wait to see the surgeon at the end of the month for the real results on the actual scale she weighed in on the day before the surgery.  He said we would do a couple of trials before permanenty implaning but i am hoping that he will see the immediate benefits and pull the trigger so we can move ahead to a permanent fix.  This is actually the first treatment that has been really successful for Megan out of any!  At first her seizures increased a lot but I think it was because her brain was getting nutrition and everything was firing - something new for her.  They seem to have eased up some now that we are 3 1/2 weeks in.  I am not certain of that theory but it seems that way.  She is much more alert and her skin pallor looks beautiful.  No rings around her eyes and sickly pale face.  She seems to have a glow in her complexion.  Nutrition is an amazing thing.  Not a disease cure but certainly helpful.

On the flip side this is something I had to express to someone regarding Megan's disease and the dynamics that go along with it that we dont like to think about.  Hard to write this but in summary it says something of where we are now and where we have been to....

The face of her disease has always been this severe and we do not know what tomorrow will bring for her. Since her official diagnosis right before her 1st birthday we have known this and have had a few very close calls when she somehow rallied back - each time the disease taking some more of her though. It is hard to have to explain that to kids.  its hard to tell an adult. Definitely hurts but we have to deal with the hand we were dealt. We dont spend our time anticipating when it will happen because then we will be wasting the time she has on sorrow that will rear its ugly head eventually. James and Ryan know that every day she is here is a gift and when she is tired and God is ready to take her home - he will. And we will be sad but she will not hurt anymore and will finally be free to run and play with all the other angels and will be with family there that will love her until we see her again. It was awful to have to make them realize this - devastating actually. ...she is the best thing that ever happened to me. As Ryan puts it we are lucky God picked us to have Megan instead of a family that would not care for her the way she needs. In that respect she is very fortunate! She has shown me the true meaning of unconditional love in its purest most innocent form. She does not have a bad bone in her whole body - she knows how to give love and to receive love and she gets and gives plenty of both. I think so much of it that it has kept her here long past her time. A psychic who does not know me or anything about me just blurted that out to my sister at a business function they both attended....she did not know my sister either.


She told her "your niece has been ready to cross over several times and was at the bridge but did not - because of the love her mother has for her she is staying." I realized then that I had to tell Megan that when she was tired she could go and I would be okay - we all would. I dont know what she understands but I told her in case...

Hoping for success

February has been a whirwind of a month.  With all of the appointments, tests, procedures and consultations Megan had there is surely going to be some good outcomes.  Hopefully anyway.

Monday we had a emergency consult with the GI Dr. at Shands due to her progressive gastroparesis and weight loss.  I went to discuss a GI Stimulator as the options presented by local GI team were not options for Megan.  GJ Tube is not possible due to all of her allergies and that there is not a single enteral formula that meets her needs for the J tube.  Home prepared blenderized diet can not be used which is what I have had to come up with to be able to give her anything.  The other is TPN which is the insertion of a port so she can be fed through IV.  Not going to happen.  You dont put ports in patients with immune system deficiencies or with increased risk of infection.  Last April we started the immunoglobulin therapy for Megan and did not get a port for that.  Instead of monthly IV infusion we do weekly sub Q at home because of the risk the port posed to her.  Put it in so she can deteriorate from infections and most likely pass away.  We still are on the weekly infusion and will continue to be for a while. 

I was very pleased that the Dr. was thinking the same way that I was.  That this is our option.  While new for ped patients - very new - it gives us hope that she can get some nutrition in as the stimulator will serve like a pacemaker does for the heart, only in the stomach muscles.  It will send electric impulses to the muscles that move the food through to digest  He was so on it that we are already scheduled for pre-op on the 23rd and insertion on the 24th up in Gainesville.  It will be amazing to see what her body will do - and her brain if she is absorbing nutrients, vitamins and SEIZURE medications!!!! 

We also had the urodynamics study done at the crack of dawn on Tuesday morning.  Another procedure off the list....I am not scheduling the follow up until after the GI implant because I am not up for anything else this week.  Worn out.  Megan and I both. 

I feel very guilty that I will be gone Thursday through whenever they say Meg is okay to come home.  Minimum of 2 days - depending on what happens.  I know this story well though.  Have lived it out too many times.  My guilt is for Ryan.  It is really hard on him.  All that went on when he was 5 and 6 with Megan really affected him and his anxiety - separation and in general - is severe.  I hate to have to stir it up.  He wont realize it but it will come out and I am certain there will be some regressive behaviors. 

Have been reading a great book.  Not an interesting topic for most but I am getting a lot out of it.  It is called Families Living With Chronic Illness and Disability.  It is so on for a family like mine with the kids, marriage, normal life, the disability world and the lack of knowledge the rest of the world has or cares not to have when it comes to what supports are needed for the family to survive.  It will also be a great tool when it comes to advocating for Megan and our family.  I realize even more that I should not disregard the needs that still exist outside of Megan or feel weak to need more. 

OMG

Venting here.  I hate doctors offices!!!!  I am so sick of being in them.  And I hate the stupid medical assistants who cant get anything right...........espeially when they are working in an office that is taking care of chronic and disabled children.  Pay attention and follow through on what you were supposed to do so it gets done and I dont have to chase may tail in circles to make sure you do your job.  This is the best.  I am at St. Joes at the Medical Arts Building.  The 3rd floor is all pediatrics and specialists.  Nutrition, mobility, movement disorders, GI, metabolic disorders - basically all the kids being seen there have issues - big ones.  So I am waiting for the Dr. that does the botox injections for spasticity and movement disorders and Megan's feeding pump clogs and I can not get it to work. She is sick with a fever - but we could not miss this appt or else we would be 6 months down the road for a reschedule.  So I make sure we are there.  With her fever I need to make sure she is hydrated and fed - also she has lost 2 more pounds due to more GI complications that we are waiting on the GI Dr.s Med assistant to refer us into Shands on an urgent basis for a GI stimulator so she can digest - which she screwed up - per  my comments above.  Anyway the nutrition is really important.  I go out to the front desk and ask the receptionist for a cup so I can at least get the food out of the feeding bag and give her bolus feeds to keep her hydrated.  She tells me there arent any.  I ask - is there a kitchen that you all use maybe?  A water cooler?  Then I say wait the ped lab is right here - they have to have a sterile specimen cup.  She tells me no.  I tell her why I need it - to feed my daughter and her feeding pump broke(the 60cc syringe I have does not fit into the top of the bag to extract the food and the 10 cc syringe is too short to get in there to get any food.  Besides the fact that it is really hard to do that with a sick crying spastic child with flailing arms without spilling it before being able to get it out and get it into the gtube.  She tells me I cant go to the lab and ask.  I ask her if she is able to....she says no.  She also knew exactly who Megan was because she saw us come in - everyone saw and heard us come in.  She was arching up out of her wheel chair and her arms were extended out cojpletely straight while she was crying and choking on phlem..  I almost killed this woman.....I did not say anything...I just looked at her and walked away in shock.  Can you  imagine?  I felt like telling her I would not pee on her if she was on fire in front of me.  What is wrong with people?????????????????

Tinkerbell | Registered in the Online Star Register for Megan Garrett

Tinkerbell Registered in the Online Star Register for Megan Garrett

Let the holiday begin!  Took Ryan and Megan to see Santa last night and we were actually able to get a picture with Santa.  So awesome.  It is unusual that we can actually get a picture like this!!!!!!