8 months home

Has it really been almost 3 months since I updated this? Sorry for whom ever reads this. I was going to be so good about keeping this up. I guess a lot has happened in the last few months. Elle did get her surgery, she had a Gtube put in and a fundoplication surgery. Also during the surgery we found out she was tongue tied. They clipped that too. Recovery was a little harder then we excepted but we made it through. Since surgery she has done awesome. Gaining weight , eating like crazy, and has even learned to start chewing. Recently she has started making more noise. screeching like crazy, slowly finding her voice. Next week we go in for another hearing check and throat check. I am excited to have another hearing, since getting her tubes put in her hearing seems to be improving more and more each day. We still cant get her to drink anything. but its all a work in progress.


Her development has gone up quite a bit. She is now around a 12-15 month old. She amazes us on how fast she can learn things. Communication has still been a challenge, being non verbal and having such low vision. Sign language is challenging for her. So after some research from her eye doctor and having her file reviewed at the vision department of Idaho state university . we have decided to try tactile symbols . I have never heard of it or ever worked with anything like it. But we are getting all her therapist on board and hope for a positive reaction. We will start small, this week only working on one, a spoon . she feels it each time before we have a snack or a meal. The idea is that some day she will be able to bring me the spoon to tell me she wants to eat. Next week we will add another symbol. Such as a small piece of fabric to tell her its bedtime or nap time. We will add a new item each week till we have our schedule down. Then once she gets those memorized we will work on other things. Its a lot of work but if it gives her a voice then its all worth it.


In November she got the stomach flu. That was scary because of her surgery . she cant puke, instead she stared ripping internal stiches. We ended up in the doctors they put her on anti nausea meds. They next night went pretty bad, the wretching got really bad , it was so hard she pushed scar tissue out of her gtube site. They resulted in a night in the ER. Poor girl has been through so much. But through it all she kept that smile.


Christmas was fun. She loved the wrapping papers and all the boxes. Didn't really care about the toy inside. But once all the wrap was cleaned up she did enjoy her gifts. We did manage to get sick over Christmas too, the flu. It mostly just wiped out mom and dad but a few kids got it. Elle and I missed one family Christmas due to me being so sick. Elle got a little touch of it but for the most part stayed healthy.


A start of a new year will hopefully start out without any sickie bugs. We are back in full time therapy. We see PT, OT and speech each week. We are also starting the process of getting visual therapy.


Elle's likes-


Ac, the dog
eating, everything and anything. Its shocking how much she wants to eat. If she would start drink something we could easily get the gtube back out. I think will having the acid reflex under control , she feels so much better. pus it stopped the vomiting.
ripping everything out of the book shelves
lighted toys
music, she loves it. she had so much testing done before her surgery and the only thing that kept her calm was listening to music.
Going down stairs into the big boys room
going bye bye
giving kisses and hugs
sitting between mom and dad


Elle's dislikes


the blender, she has regress in this area. She was fine with it before but now cries the whole time its on( another reason we think her hearing has improved)
headphones, why we dont know she doesn't even like people wearing them well they are holding her
to many people around her, I am sure due to he low vision. hard to keep track of where everything is and whos who
getting her gtube site cleaned
bathtime
water at all...unless it is the small spray bottle used to wet her hair before combing she likes that one
mommy going bye bye without her
to bright of rooms
grocery carts, scared to death of them 

Learn to accept the unexpected

This month has been super crazy for our family. Lots going on as always with a couple unexpected turns. Elle is doing great, trying to sign 'more' more and more. I love watching her realize people respond to her signing. Her thinks its so funny. Since her NG tube she has been even happier then before. She now has so much energy its hard to keep up. But we are loving it , well maybe not the shredding of books. Kendra was not to happy to have her new library book ripped. Oops,  guess we didnt put that one up high enough.
Now on the health stuff -After more test results and constant trouble with her NG we have decided to go with the G tube. Its a hard decision but one all her doctors keep pushing for. We were holding onto to the hope she would start to eat and drink again but we are now realizing that this road is going to be a long one. And with all Elle's sensory stuff she would do better with a G tube. We also found out Elle is having a hard time digesting food. We are making changes in her diet and putting her on medication to help. Only time will tell if it works.
In other crazy news, our 14 yr old son had a swollen foot. So we took him in and found out he bruised the bone and also broke his foot. He has to sit out a few weeks of football but will be okay in time. The same day my hubby came down with a bug at home with a fever and cough. And then we took Taya in for a knee pain she was having. They did xrays and found out she has broken her knee in two different spots and there is something in the back of her knee. (Most likely something to do with the injury). But the bone doctors here have never seen anything like it in 30 years of practice.  So off we go to Shiners in Spokane. We are praying they will have good news for us and she will recover quickly from this.
We had hope to have Taya's appointment and Elle's G tube surgery the same day but the odds are not looking good for that.

So if you think of it say a little prayer for our family. Also that the stomach flu that was at our house yesterday stops with only one kid being sick.

God knew all these crazy things would happen in the same week, so no surprise for Him. We also know He will be right beside us to walk us through no matter what comes our way. Leaning on Him when things dont go our way. Another lesson in progress of learning. .....

September

Where to start? Elle, has been doing good as far as bonding and making progress with gross motor skills but with feeding we have taken a huge step backwards. Elle, has always had her good days and her bad days when it comes to eating. She is loving trying new foods but doesn't eat enough to gain any weight. These last few weeks she has shown less and less interest in her bottle. Which at first we figured she would just ween her self off it and start drinking from a cup. This was not the case, she simply started to refuse liquid all together. This is hard because you need liquids ! As the weeks progressed this got worse. The day she got her tubes put in her ears she was so dry they needed give her iv fluids. After surgery she did really well for a few days and went right back to refusing fluids. This last week it turned for the worse, by Saturday night she hadn't had anything to drink since Friday morning. Dehydration set in we ended up spending 5 hours in the ER getting iv fluids again. She lost more weight again. Poor girl she can't afford to lose weight. We were back in the pediatrician office again yesterday morning,  she still wasn't drinking. Despite all our efforts new bottles, new cups, trying to spoon feed water, straws you name it .  In my heart I have known we were losing the battle but I really wanted to think she would turn around. Our first short term goal was to get her up to 725 calories a day , with a longer goal of 1020 calories (which is where she should be at her age and size). On our good days with Elle we are getting only around 400 calories before she loses interest in eating or drinking. Some days we would get 700 but these days were very few. All of this to try to explain why she has been diagnosed with failure to thrive. It's hard to explain because she is doing great trying foods just not great eating them. As her food therapist said she is still at around a 3 month old in eating,  she is suckling her food and not chewing.
So today Miss Elle got a NG tube put in. Its a temporary thing (hopefully) to try and get her body use to having calories and work on expanding her stomach. Also to keep her hydrated.  Which is huge! No more hospital visits for iv fluids. So far she is doing great with, no tugging or pulling on it. We are praying she keeps in tonight.

3 months

Wow, I guess I have some check up to do here. Elle is doing great busy, busy. She is now almost full time walking . She still has only stood up in the middle of the room a couple times. Yet, she walks almost all the time. She seems to understand more and more each day. She started giving hugs this last week, Love this! Still no talking but is starting to communicate more and more each day. Yesterday at therapy they wanted her to walk down the hall and she sat down and shook her head no, we were both surprised. She hadn't done that one yet. We held a shower for my baby sister this weekend.  when everyone started arriving she started to get really nervous, she wanted down and then started pushing me toward the stairs and wanted up when we got to them. That was huge she knew what she wanted and communicated it very well. We are just loving watching her . She started eating more food, its usually one day on, one day off. Her small motor skills are getting better, she picks up a fork and will eat small things off it. Its pretty exciting to see her eating more, she doesn't eat much at one time. We will keep working on it. We are also working on her drinking out of a cup, so far not a lot of success but over time we will get there. At food therapy we got her to sit in a chair with a tray, huge victory!! We now have that chair on a chair! this will help a lot with getting her to eat.
Elle, has another ear infection and bronchitis. Poor baby she has had this ear infection since we got home. We went to a ear nose and throat specialist. And we decided to put tubes in, her ear canals are very narrow. Lots of fluid behind her ears. She goes into surgery for the tubes later this month. We are trying breathing treatments to try clear up the whizzing. Praying that works, if not we may have surgery to remove her tonsils and anodes.


Elle's likes


her bottle
feeding her self with a fork
sitting in the grass
zipper pjs
her siblings
walking around pulling everything off the coffee tables and counters she can reach
opening all the drawers and cabinets in the kitchen, she doesn't pull anything out just opens them
music, she can dance right to the beat
climbing up on the couches
when her daddy comes home, love watching her do her happy dance each day when he comes home
fruit, she seems to really like real fruit not baby food fruit
dogs and cats, she loved my mom pug well we were there. he seemed to love her too.




Elle's dislikes
paper
water bottles
water any way, baths, putting her hands in water
getting messy, she hates her face, hands, or feet dirty
groups of people, but did pretty good in a group sitting in her stroller
loud noises
breathing treatments


Elle, still shows a lot of signs of autisms but each day they seem to be getting less and less. Less head banging, less whipping her head from side to side, less rocking. She is still a super star at our house. Her sibling still cant get enough of their baby sister. They hate watching her cry for any reason. After her breathing treatments each kid wants to love on her, feeling so bad for her for getting so upset. I love how God has glued this family together with this sweet little girl. They all agree on something, they love baby Elle. They still fight over who gets to hold her and they all want a turn helping feed her.
God has giving us such a precious jewel. I feel sorry for anyone who ever try's cross this little girl wrong , they will have 8 siblings to answer to.

5 weeks home

Busy, is a understatement.  This last week has been super crazy. Elle is doing great. We have gone to the PT, speech, vision, hearing, and genetics. All this last week well finishing up a crazy spring sports season. To be honest I hit my wall, yes we are doing great but this momma is tired.  There is a season for everything and this sports season is ending. I love watching my kids do things they love but the endless running is , well its almost over. I am not complaining just explaining :) I feel more rested today, my sweet hubby surprised me with a date night. He knew just what I needed, I do love him. <3

Back to Elle, with all the testing she is rounding out to be right about 5 months developmentally,  in some things  she is closer to 12 months others she test closer to 3 months.  Nothing has surprised us. We mostly just wanted a base line to see where we are starting.  And to see how far we can go. Her hearing showed moderate hearing loss, constant with untreated ear infections. This could be temporary hearing loss or permanent.  Time will tell, we are waiting to hear from our pediatrician to see if he wants farther testing or to put tubes in. She can hear just not much below a normal conversation level. This can sometimes affect how she is understanding what we are saying.

She is starting PT, OT and speech once a week. Which is busy but they are back to back appointments,  making it about a 2 hours once a week. Not so bad.  We see the nutritionist next week, I am excited to see him. I want a base to start off .

Elle drank her first bottle outside the house,  we were super excited about this. We watched a football game in the stands and she did great. I was worried the noise would be to much but she didn't mind. Of course we stayed on the far end and kept to ourselves,  just to keep things calm.

Elle's likes

Her siblings
Her mom and dad
The vacuum
Looking at her reflection in the fridge
Pushing buttons in the microwave
Licking everything
We have gotten her to lick some food off a fork, pasta! Of course she only licked about 1 calorie off it but its a start. We keep offering and every once and awhile she will try it.
Hats, everyone else's hats but her own ;)

Elle's dislikes

Doctor offices
Strange PEOPLE
touching water
Crinkled paper
Water bottles
Bathtime
Having her nails clipped
Different bottles, she will only drink out of a tommy tippee bottle
Spray sunscreens

Each day is a new adventure with her, we love watching her soak up the world around her. The kids are all still doing great with her. She gets lots of loving every day.  We are getting nap time down and bedtime. Nap time is doing better then bedtime.  Nap time is getting closer to the same time every day.  Bedtime not so much, we keep trying but she is all over the place with it.
Bonding is going really well, when we came home from our date night. She heard my voice and giggled and crawled right to me. With a big old smile and wanted to just sit with me. Then everytime she would look up at me she would giggle. Just love this little girl.

One month home

Wow,  one month home with our busy little girl . I tried to get a photo of her for the update and took 25, these 5 are the closest we could get. She never stops moving,  her new name is blurr ;)
We are doing well. Trying to finish up our crazy spring sports. Elle has been a great trooper going to all the games and practices.  I am looking forward to next week, 2 less sports.
We have gone to a few of the many doctor and therapy appointments, we have lined up. Finding out a little more about where to start.
We are trying to work out the schedule so we only have one crazy day a week but with two in 4 different therapies , well its turning to be kinda hard. We had our first speech yesterday,  she test mostly about a 3 month old and in somethings a 5 month old. I wasn't surprised. This one will take time, and we plan to put it towards the bottom of our list. OT is on the top along with nutritionist.
She is still making great progress.  She has now taking 10 steps at one time!! She is not always to happy to try walking but if you catch her in the right mood, she takes off.
She is exploring the whole upstairs now. Crawling down to the bedrooms and into the kitchen.  She loves doors, she giggles each time she pushes on it and it swings open.
We still can't get her to sit in her highchair. We have started putting random soft foods on the coffèe table to let her explore them. On father's day, we did a donut. She would grab it and crumble it up and then lick up the crumbs. She seem quite proud of herself. She is still a celebrity in our house, everyone still loves to play with her. Fighting over who gets to watch her, we are loving having a baby around.

Our biggest progress this week- for the last two days she has let me hold her well she drinks her bottle !! This is huge for us, 6 weeks ago on gottcha day we couldn't even touch her bottle let only her. Each day we make baby steps forward,  not alot of set backs so far. Her attachment and bonding is going great. She allows us to hold her for long periods at a time. She loves climbing all over us when we are watching TV. She is full of giggles. Her favorite thing is zipper pajamas,  not sure why but whenever you un zip or zipper them up it sends her into a giggle fit. And yes she is still licking everything. 

We went to the eye specialist last week. Found out she can see clearly about 2 feet in front of her. Which is better then we thought, she gets her glasses in a few weeks. They said with them she will be able to see clearly about 5 feet. We will go back in 6 months and see him again. Hopefully she will be a little more agreeable then. He felt comfortable with he saw but didnt get all he had wanted done. But with a girl how never sits still and is scared of strangers.  I think we did pretty good.

We are noticing her relax more and more.  She doesn't stress out as easy as she did. We have also noticed a big change in her swaying/rocking, she still does it but it seems to be less and less.

She is growing leap and bonds.  We didnt get her weight this week but last week she had gained 5lbs since we got home. This week are noticing her pants are all getting short on her. I can't to go in a couple weeks to the doctor to see how much she has grown. She looks chubber and chubber each day.

She is starting to use her hands more, she doesn't reach for much but we are working on it. OT will be very helpful with this. 

Elle's likes

To be home, its so cute she squeals And giggles when we turn onto our gravel road to go home.

Her mommy and daddy,  she seems to prefer us over anyone, love, love this

Her crib

Her hands

Her stroller and car seat

Sugar, this girl has a major sweet tooth. 

Doors, she can't reach the knob but if they are not latched she pushes them open

Licking, This one is getting hard because we have been going to doctor office after doctor office.  Its super gross to lick public floors. Hoping getting her glasses will help

Elle's dislikes

Her highchair

Anyone with a lab coat or scurbs 

To loud of music

Announcers

Fast bright lights

Big crowds

3 weeks home

I can't believe that it has only been 3 weeks, if feels like she has always been a part of our family. Elle, is doing great. We went to the doctor on Monday. She gain another pound! That means in a month she has gained 5 pounds. We were thrilled,  I have been stressing about how many bottle she gets each day. I guess I can relax alittle. She is doing great. We are meeting with a nutritionist next week, I want a little guidance on what we should be giving her. Only taking a bottle at 3 is hard. Although we are getting close to right amount of calories she should get at 3, I want to make she is getting the right calories. We have been to lots of appointments,  we drove to spokane to meet with a genetics doctor.  But as we were walking up to the door of the office they called and canceled. So we reschedule for the 24th. On Friday we drive back up to spokane to see a eye specialist.  I am excited to see him,  we have a idea of what she see but it will be really nice to know how much.
So far she still show interest in walking. She is up to 7 steps at a time.
Her climbing skills have gotten scary good. She loves to climb up and sit on the couch but this week she has decided that sitting on the back of the couch is fun, crazy baby.
We found that for nap time if we lay her in the play pen in the middle of the living room and turn the radio on she sleeps :) a big victory for us. She is in a much better mood when she gets a nap. We have tried it a few times at bedtime and it has worked the last two days.
Elle's likes-
Giggling,  this girl laughs all the time
Taking steps
Climbing on everything
Pulling hair
Her piano she got from grandma
The window by the front door
Licking shoes (super gross, now when we catch her with a shoe we say no, no, no. She thinks its funny and says no, no back. I think she think the shoes are called no, no's)
She still only says mama and no, no
Licking, one good thing is she will lick foods not many but she will try some
Her car seat
Her stroller
Buckles

Elle's dislikes
Loud crowds
Strange people touching her
Doctor offices
Her highchair
The walker
Bathtime
Sticking anything in her mouth
Drinking anything non sweet
Not being allowed to sit on the vacuum well we are vacuuming the rugs
The door in the van

She is expanding her territory.  She now crawls into the kitchen but only on her terms. She loves crawling down to my bedroom. Her crib is in there and she loves her crib.
We feel like a got a cheat card with this adoption. She is transitioning so well. Our kids are all transitioning so well. They can't help but pick her up , talk to her, play with her every time they walk through the room. She is showing great signs of bonding. She prefers her mommy and daddy. She turns to us when strangers try to touch her. She is starting to cry when I leave the room or crawl after me saying mama. So cute. She shows signs of recognizing when we get home. As soon as we turn on our gravel road she starts to giggle.
Today is the last day of school for all the kids. She is going to love having them home all day.
We had been watching most games from the car but recently have been sitting in the outfield in the shade and grass. The crowd doesn't seem to bother her from there. The announcer from the last game she didn't like. I guess she spoke to loud or maybe he had a annoying voice ;)
Over all she is great, she still gets nervous very easy. The littest thing throws her off and still when she gets to stressed she stops eating.  This is a hard one because we have lots of doctors appointments and she greatly dislikes them. But I am she over time we will work this out.