Pictures from Avery’s last Surgery

The minute we walked into the hospital she knew…the girl just knew what was going to happen…She was starting to get cranky too bc they were taking forever and going way past her time to go in the operating room…and She hadnt eaten anything since midnight. apparently the dr was running behind with the operation that was scheduled before her.

Aww George..Her and George have been on quite the wild adventure together…He is always right there by her side..and she loves him!!!!!

She told me George wanted the hat on too 

Getting rolled to the operating room

Here we goo…and im a little nervous mom….I asked to go back with her while they put her to sleep..and no matter how many times you do it it never gets easy..

and it never gets easier to see them like this…when she was waking up u see the oxygen mask next to her..well she didn’t need it but she thought she did..she would nuzzle right up into the mask..it was kind of funny..

When she did wake she kept a very close eye on the nurse as you can see!!

Here are the screws that were in Avery’s hip..the last time when she had the screws removed up in Boston the dr accidentally threw them away..and so this time I made sure I told her dr here that I wanted them..and so when he came out to talk to me he brought them out to me…I was kind of shocked to see them that long!!!

Hopefully this will be my last post on her hips for a very long time!!!!

Avery’s Surgery

Just wanted to let everyone know that Avery will be having surgery on Friday. She is having her screw removal from her hip that she had surgery on in September. Her ortho dr here in South Carolina will be doing the procedure so we don’t have to go up to Boston. Whew!

It should be an easy procedure. SHOULD being the key word. but anytime she goes under its always more riskier bc of her sleep apnea. But if everything goes ok she will go home the same day just be a little sore for a couple of days. Ive already warned this dr that I WANT the screws..the other dr threw them away from the last one.

Luckily she is over her stomach bug…We have had the nasty stomach bug at our house and it has lasted forever..it stays around for 4 days at a time..so far we are 4 for 5. and Jared and I haven't gotten it yet.whew.

It has been a year since we have started down this journey with her hips and it is coming to an end..I cant wait for this to be all behind us. So far everything that we did seems to be working so we are thankful we went through with it..no looking back.no regrets.

6 month post op from Avery’s surgery

 

Avery went back to orthopedic dr that is here to check her hips..and had an x-ray done and they both look AWESOME…PTL!!!!!   I am always so nervous when they check bc I'm afraid he will tell me they are out or something bad. But they did x-rays and both look great and are in..so do you know what that means??? That means that a year later the one side is still in..that means it was a success!!!!  Thanks be to God!! and it has been six months already on the other side and so far so good. But since it has been six months that means its time to take the screws out. So Avery is scheduled for surgery March 29 to get her screws removed. IT should be an easy same day surgery. But it is still a surgery and it still is never easy to see your child go through that and with Avery having sleep apnea things are trickier when she is put to sleep. But I will be sooooo happy to put this all behind us and be done with it. It has been a long year and one I don’t want to repeat.

Avery was/is popping her knees out too but she isn't doing it as much anymore since she isn't in the cast. So we are just going to watch it for now and  I am comfortable with that for now. So no surgery on her knees right now..Wooohooo!!! Hopefully over time she will stop completely and then they will just get stronger and stay in place. The doctor couldn’t pop them out him self while she was just laying on the table all relaxed so that was good too.

We are cast FREE!!!!!!!!!!!!

Wooohooo!!!  We are cast free!!!  The x-rays looked great and dr said take it off…so we happily took it off…Avery was super excited to get it off..she kept saying whoa…as she first started to walk..She will still have to sleep in it for another month..but I can handle that and so can she..This is pretty much behind us and we couldn’t be happier..We do have to go back in six months to take the screws out of the side we just did..but dr said it is a very simple procedure and is an out patient procedure. Thanks be to God for carrying us through this last year.

Here is a video of her walking out of the dr.s office..

Afterwards I took her out for a celebration lunch..she chose Chick-fil-A…

We also got a knee brace that we have to start wearing..She pops her knees out of place..and we are going to try to brace it..We cant do ligament surgery for the same reason why we couldn’t do it with her hips…it will more then likely not work and over time just go back to the same way…other option is bone structural surgery but we cant do that until she is around 10 or 11 he said..so for now we have to wait..so while we wait we figured we would try bracing it..Bracing it might work bc its suppose to keep it in place so it cant slide out..I am thinking if we wear the brace for awhile maybe she will get out of the habit of doing it so we don’t have to do any surgery..For the most part it doesn’t cause her any pain but there are times where she pops it out and cant get it back in and says owe..so then it does hurt her.. so she will wear one brace on each knee for most of the day...right now though I'm giving her a break from everything for at least a week…I think she deserves that!!

Count down is on!!!!

FOUR more days to go until we are cast free!!!!!! (IF the x-rays look good!) We I can not wait until this Is all behind us!!! Tuesday is the big day!!!

I realized I never posted a video of Avery walking around with her cast on..she started walking around with it on about one month and one week after her surgery…you would never know she had a spica cast on if you seen her walking..you might wonder why she is humped over a little but she doesn’t walk slow..she will even try to run in it.silly girl.

I will be ready to wear regular clothes on her..She can only wear skirts and dresses..So far it has worked out weather wise…it still is pretty nice here so we haven't had to worry about her legs getting cold..but when we went up to SD she did get cold..we wore leg warmers on her a few times..the ones I made last time..Where I took  long socks and cut off the toe and heel part and sewed the sock back together a little bit and you have leg warmers…soo easy and soo cute..

 

31 for 21: Day 11 One Month Marker

It has been ONE month since Avery’s surgery. ONE month down and ONE more to go..and we can say good ridden to the cast..and all of this is going to be one huge distant memory. Destiny just told me the other day too…Mom can you believe it Avery can get her cast off in almost a month. So apparently we are all counting down the days. We were told that Avery had to at least stay off of her feet for at least a month and after that she could walk if she wanted to as long as she left the cast on…So my girls kept saying tonight..Avery can walk tomorrow mom…Avery can walk tomorrow..I don’t know if they just think she is going to miracously get off the couch and walk bc it has been one month and that is what she did last time or what..but I informed them that she will walk when it feels comfortable to her. Who knows when that will be but my back is hoping it is soon!!! ;)

Avery seems to be adjusting well to life in the cast. We have only had one little accident in the cast. Apparently she was trying to get my attention and never got it and ended up going pee on the couch and it got all over her cast..so we had to take the top of and blow dry it and then turn it over and do the same with the back. I was thankful once again that the cast was removable to be able to do this. What does she do all day???  Well she stays on the couch and either watches tv or plays on the iPad. We have been trying to get her caught up on all of her school work. She just started homebound this week..took awhile to get it going…She will get 5 hours a week. Three hours from her regular teacher. one hour from one of her resource teachers.and one hour from her speech therapist.

We will go to her ortho dr down here on Monday and they will x-ray her and check to make sure that everything is still in place and then send everything up to her dr in Boston. Praying everything is healing good and it is still in place..bc then it means we are doing this all for something..
Since we are at the one month marker that also means that she can take a bath…YAY for an actual bath!!! I can take her cast of and lay her in a bathtub but after she is done she has to go directly back in the cast. I am tired of sponge baths and she is too…but she does enjoy to get her hair washed..kind of like being at a salon I guess. She soaks it all in..and just lays there with a huge smile on her eyes and says aw..aw..over and over again.

Apparently she has been watching Dora a little to much while on couch rest..ha! Bc Destiny came home from school and all of a sudden you hear Avery tell her “Hola” …and Destiny does a double take and looks at me strangely..and says since when has Avery learned Spanish..So she doesn’t speak English very good but you can defiantly  understand her Spanish..maybe we are teaching her the wrong language..lol!
Avery has been popping her right knee in and out…and she will then complain that it hurts..this is making me very nervous…Why???? Well one look at the picture…does this look right to you????

The way she does it has got to be moving her right hip in weird positions??? or maybe its just my thinking…and two..she has moved onto something else..So we have corrected her hips and she can no longer pop them in and out and know since we have done that she has found another joint to do it to. Her knee…Do I really have to go through all of this again this time with her knees???? I trying not to jump to conclusions and think the worse bc I do not know anything else..but you can be sure I will be asking her dr about it on Monday.

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 stimulant..so 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 it..it 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 do..it is on a track..Mark your calendars now..Oct. 6th…

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 stairs..im 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 back..lol! 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 clock..one is every four hours and one is every six hours..so 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 too..it 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 bath..so 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 set..it 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….


Aww..so 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 month..so we have to keep her tied down for at least a month..so 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 them..so 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 you..so 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 burns..so 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…

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 backpack..so im standing there for about 5 minutes and know I have to get down there..so 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 her..so 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 me..so 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 that..as 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 place..so 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 guess

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…

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 anymore..so 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 work..so 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 it..you 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 then..at 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 away..so 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