Saturday, September 29, 2012

Quick Update on Avery

We are two weeks post surgery and she is doing good..she is finally back to herself…she is off of all of her pain medicine..boy has it been a process getting her off of them..we had to slowly wean her from them one dose by one dose. She just looks better now too..her color’s back and she’s not sleeping all time..way more perkier and can stand her ground again....Took her back to the dr this week for weight check..bc she wasn’t eating remember so they prescribed an appetite anyways we have stopped that bc she is eating now..she hasn’t gained any weight in the last week but she hasn’t lost any either so we will take that..We are still working on getting home bound set up for her school…its been kind of a slow process..I thought they were going to get it going before we left but I guess not..but they said hopefully next week it will start back up. It is killing Avery not to go to school…she wants to go soo bad..many times she will say school..or when we pick the girls up from school..she wants to go..
They have been sending homework with the older girls but up until today she has had no interest really..and when I tried to work with her her hand would just shake when she was writing…so we def took a few steps back in that department again…she did that last time too..Her OT had her wear a weighted glove last week to work on seemed to help a little..
Two more weeks to really keep her down..she cant bear weight on that at all for at least a month but Dr.Kim said that after a month she can walk around with her cast on like she did last time if she wants too..She will go to her ortho dr here in Greenville in a couple of weeks where they will xray the hip and make sure everything looks good.
*I am going to try to blog once again in October once a day..why??? 31 for 21…31 days for 21 chromosome bc its Down syndrome awareness month…if u have  blog I encourage you to join in…it doesn’t have to be about Down syndrome..just why u are doing it..the posts are not going to be all about Avery…or Down syndrome bc well that is not what our life is all about…its just a small part of Avery..and showing everything else shows that she is just like any other child..she just happens to be blessed with an extra chromosome..;) But Im sure there will be some in there for sure just about Down syndrome…
** I m feeling very guilty for not doing more this year for our buddy walk..I should of did more and I was going to do more but it just crept up on me way to quick…Avery did so good last year..she got third for raising the most money..I guess I have a good excuse though..I was busying taking care of Avery this last month..BUT we are still planning on walking..we would love all of you that are local to come and walk with us..What is the Buddy Walk? A day to celebrate all individuals with Down syndrome and to also promote acceptance and inclusion of people with Down syndrome. It is lots of fun..and the walk itself is only a mile..and its very easy to is on a track..Mark your calendars now..Oct. 6th…

Monday, September 24, 2012

Making Tye-dye Shirts

The girls wanted to do one last craft project before school started so we had this tye dye kit that we had bought at the beginning of summer to do and never got around to doing we FINALLY did them..better late then never right;)
I thought they turned out pretty good…Avery’s was suppose to be a heart..the top part isn't as noticeable..but close enough..they are still cute!!
I love how Avery just instantly put her arms around her sisters…oh how she loves them girls so much and they love her too…Love doesn’t count chromosomes!!!!!

Wednesday, September 19, 2012

First Couple of Days Home

Wow is it ever good to be home!!! and to be back in your own bed with no alarms going off every few minutes..even better..I felt like a walking zombie yesterday all day..
The older girls were very happy to see me in the morning..early morning when I woke them up for school..I got in too late the other night to see them..they were all sleeping. They wanted to stay up and wait but good thing they didn’t. or I would have been draying them out of bed in the morning.
I walked into the babies room to get them yesterday and they were very stunned to see me..they didn’t say a word..Jayla wasn’t even sure if she wanted out of the crib but Jianna came right to me and gave me a big hug after I asked for one..but then even after I got them ready for the day they came right down sure they had to come and see if Grandma was still here..and yes she was..but then they really didn’t talk all morning..Jayla did come and lay with me for awhile..They are both sick..but not really sick you can just hear it in there voices..and there cry..Also Destiny is kind of sick too..its only in her voice too..
We pretty much laid around all morning and did nothing..Avery and the babies fought over all of Avery’s stuff all day..and Jared figures that the whine came back with the babies bc mom came! I tried to get things done but just had no energy to get it done..the suitcases sat all packed still which also meant clothes didn’t  get washed either..Finally after the girls came home from school..I couldn’t take it anymore..I laid down for a nap and was out for the rest of the afternoon..Avery was out too…and the babies slept too..until the phone rang which was a good thing bc I needed to get up right at the time to give Avery her medicine.
Avery is getting her medicine around the is every four hours and one is every six I have to set my alarm at night to get up and give it to her..not fun! Kind of makes it hard to catch up on sleep when you cant go to bed early bc you have to wait for a certain dose and then have to get up makes it harder to go back to sleep too..
When everyone woke up the girls had lots of fun playing with Avery’s new stuff too… (check out he rooster tail…lol..)
Making cool pictures using finger prints..
A gift was waiting for her when she got home and it included this lap pad..and she is loving it..she uses it to play with her toys on her lap..
She needed a really good hair washing and sponge to do that of course it is no easy task…{ I might go into some details about taking care of her in general in a Spica cast..bc it might help someone else that is bout ready to go through a similar situation..and I seen that people were coming to my blog by searching Spica cast..I know that is what I was doing before..doing all the research that I could..} we laid her down on the counter under towels and using the kitchen sink gave her a sponge bath..her hair…oh how her hair needed a really good washing..and conditioner was soo tangly..I am soo glad that we cut her hair short..that was the BEST thing I ever did to prepare for it bc wow it is sooo much easier to come and doesn’t get into a big snarly mess..
So Avery’s cast is removable where you can take the top off and give her a sponge bath under it too..
I have a sprayer on my sink that worked awesome to wash her hair….
DSC_0281 much better..all cleaned up..
Yes once again we have this big ole wheelchair…bc she cant bear any weight on her leg for a we have to keep her tied down for at least a we had to have a wheelchair again to get her around
When I was giving Avery a bath last night I found an abrasion on her back. It had discharged something bc it was all over her cast.
So we went to the dr today..bc they had told us to follow up with her pediatrician with in 2 days..which was good bc they actually called him yesterday and he was able to talk to one of the main dr on the floor. There was a couple of reasons for going to the dr. One being to come up with a plan to wean her from all of her pain medications. So we are going to slowly decrease a couple of her doses from one medication and get her off of that one bc we start with the other one. Which is a good idea bc the I feel like she is at a point where we can reduce the one at night for pain..but the one we are waiting is to control her muscle spasms. which you have to be on top of that one bc if u are even fifteen minutes late on it..she is getting them..Another reason is her appetite.she is still not really eating. So we weighted her so we know where to go and so we can see if she is gaining or losing weight for the next couple of weeks. We don’t want her to lose a lot of weight bc then the cast can get big too..So he put her on an appetite stimulant to see if that increases her appetite..she has to take that three times a day..Also said to try pediasure,boost..which  I told him we did and she wont drink he said to try carnation breakfast drink…so we will try the vanilla ones bc she hates anything chocolate. We have to watch her to see if she gets too sleepy on the stimulant bc I guess that can do it to if it does we will decrease the dose.
Also I had him look at the abrasion on her back and he is going to prescribe something that you would put on we have to put that on twice a day..hopefully it heals it up..
Here's my schedule so I don’t mess anything up..its hard to remember when to give everything..
This afternoon the twins have been playing with Avery on the iPad after her nice long nap…

Tuesday, September 18, 2012

Day 6-Discharged..and Our flight home

We stayed at the hospital until  2:30pm..which worked out really nice bc I could eat lunch and I tried to get Avery to eat lunch too..but then she was pretty tired around noon so she slept until it was time to leave..discharge was very smoothly. I got all of her medicines filled at CVS on the ground floor of the hospital in the morning so I had all of them.
Sleeping in the taxi ride to the airport..
We flew home with US Airways and it was a very pleasant experience for the most part.. We were dropped off in front of one of the US Airways door and there was suppose to be a person there holding a sign with my last name from Massport. So as I am standing there I see the person way down at the other door…How in the world am I going to get down there..I have two backpacks..two duffel bags..and computer bag..purse..and one little wheeler im standing there for about 5 minutes and know I have to get down I try to put as much on the stroller as I can and all of a sudden while I am bending down to pick up another bag..down goes Avery..she tipped over backwards in the stroller…she wasn’t hurt or anything..bc the bags caught then I caught the attention of a lady that was at the desk that was checking people in curbside and asked her if I could get some help…so she sent a guy down to help me and then we put all of our luggage on the cart and went up to the lady.She was the best thing ever..Soo very helpful…When we went to go get our tickets I put my four very small bags down and airline lady says did u know it was $60 per bag???  Ummm what???!!!  So I showed her the letter I got from the organization that bought the tickets for me and explained that it was a medical flight and two of the bags were just medical supplies..and so she said that she couldn’t do anything but she would call a supervisor over for after waiting FOREVER..and talking to them..they waived the bag fee for us…Thanks be to God!  So after we got all tickets and stuff we had to go through security but having that lady with me she got me right up to the front and we didn’t have to wait in the line..and she was also able to stay with my stuff while I dealt with Avery through the security. and since we were carrying narcotics we had show letter from dr…but otherwise it was ok…they just checked my bag over a little bit more..but I was ok with long as I could bring everything through that was in there..bc I had a couple of unopened Gatorades for her and also a package of juice boxes too..and then we just got to the gate and waited…the bathroom was a little tricky in that airport bc they didn’t have a little bathroom that you could just go in an shut the door.. but luckily it wasn’t busy so it worked out.. and then I just carried her onto the airplane and checked the umbrella stroller in curb side..When we got to D.C. we just waited until everyone was completely off of the plane and then I just carried her off..and then a staff member carried my other bags to my next gate. And when we got to the gate he asked the ladies behind the desk if I could just leave my bags there so I could go and get something to eat..he also gave me a punch card that gave me a free combo meal from a we got free supper then too..he gave me two cards but  I gave one back..bc Avery wasn’t eating so I didn’t even need it..but she did manage to eat some pretzels from the plane and a few of my french fries. They were so very helpful to get us on the plane in D.C. too..Our plane was kind of late taking off bc of some maintenance we we didn’t get home until 11..and we were suppose to get in at 9:30. SO Avery was very tired when we got home and went right to sleep…
Leaving Boston..
George had to have a seat too..and he probably got more food then anyone on the plane.. the flight attendants really like him I guessWinking smile
We flew into D.C. and so you could see the White house..and the Washington Monument.
Will post later about our first day home…

Sunday, September 16, 2012

Day 5

Today was a great day!! PTL!!!  We finally turned the corner..we had a very rough night last night…They were going to give her iv fluids during the night bc she was behind but then the IV ended up being no good I woke up to her screaming..and there were three people over her with the head lamp..and they were trying to salvage the IV…they worked on it for at least 30 minutes trying to save it..and the whole time she is screaming…and  then when they thought they got it they taped it down really good and started the fluids and NOPE….didn’t they just took it out..and she was happy:) she hates them IV’s. So he had to go check with the nurse to see if they were going to make him put a new iv in or if she would be ok through the night…thankfully they said that she would be ok through the night and to keep encouraging liquids through out the night..
Also today we had to play around with her pain/valium levels again..bc right away when she woke up after we moved her around to go to the potty she was crying in pain..and then we put her back on the chair she was out…so we lowered her valium dose to 1mg..and spaced that out every 6 hours..and then lowered her oxycodone to 2mg every 4 hrs..with Tylenol every 4 hrs. too..and it worked..She stayed away all day..couldn’t believe should of seen her eyes tonight…very red and very tired looking..she played around and did things…and we moved her around to the chair and back and forth to the potty and she seemed ok..every now and again the first initial move she would say owie a little then would be fine..but I think some of that is the cast rubbing on her while moving her..
She had a bath today and really enjoyed that…no crying…she really did have a great day..
She painted..
she colored..
she blew bubbles..
she smiled...
she laughed and  giggled..
She did eat some lunch..spagettios..but it didn’t stay down..she threw that back up with in 5 minutes of eating..but she has kept all of her liquids down since supper she did eat half a yogurt and maybe a couple grapes..we really pushed liquids today…and so far soo good..we didn’t have to redo IV..
We had visitors today..and it was sooo nice…Jared’s mom’s brother…Steve and Nancy came to visit us today..sooo nice..Nancy stayed with Avery for a good awhile so I could get Steve and I went for a walk in the gardens and then went for supper..very nice to just get away and not hurry back…and relax..Avery really enjoyed playing with Nancy too!! 
Avery with her nurse..Callie..we have had her the most..its so nice to have the same nurse over and over again....Avery loves her..we had her fri, sat, and then sun all during the day..Check out her eyes in the picture…this was at the end of the day…tired little girl…haha
Sounds like everything is still good through the night and tomorrow morning we will be released to go home tomorrow..yippie skippee!!!  How exciting is that..

A little nervous about flying commercially with her tomorrow...praying everything goes smoothly..we are also going home to sick kids..a little nervous about that too...we could turn around and be back in the hospital again with her down there..the dr said to keep her away from colds and sickness for awhile..ha! It would not be good for her to get a cold/sick in the cast..the whole breathing thing would be really bad!!  Praying she stays healthy...

Thank you all for all of the prayers, thoughts and love...God is good!! 

**"For I will restore health unto you, and I will heal you of your wounds, saith the Lord." Jeremiah 30:17

**"I am the Lord; who heals you." Exodus 15:26