Thursday, November 1, 2012

Cutest little trick or treaters!

I think I have the cutest hen and most beautiful ballerina around! Ember loved being all dressed up and Sienna, well she tolerated it. Sort of. By the end of the day she was done with her costume!  I just
love these girls!

 
Ember and I pilgrimage again to Philadelphia on Sunday. She has elbow surgery follow-up, appt. with her leg surgeon, and several therapy appts. I'm nervous to see what results we'll see with her elbow!

Sunday, October 14, 2012

post surgery

Surgery went good - pretty much as expected. She will wear a cast now for 3 weeks till we come back for her followup. Right now she is quite uncomfortable. Her pain meds take the edge off but she cries lots and complains of "owie elbow." Poor sweetie. Tomorrow we see her leg surgeon and I pray I don't hear the word surgery come out of his mouth! Ember is such a trooper and its hard to see her hurt. On the homefront it appears one of our little dogs got taken by a coyote. I am so sad about this. I think its cause I've been a lonely emotional mess here and I wish I could have prevented it. We'll be home Tuesday night and it will be nice to be home!

Wednesday, October 10, 2012

Philly again

Ember and I are back in Philadelphia. On Friday she will be having elbow surgery. I have so much I would like to write yet it is hard to know how much of my feelings to share. Em is doing great. She can talk nonstop! Please keep us in your prayers. Pray that the surgery goes well and that she isn't in too much pain. Pray for me as it is hard being in the hospital far from home alone with your child not knowing anyone. Pray also for Thad while he juggles both work and the other 4 kids.
I am so lucky to be Ember's mom. My children teach me so much. I am so blessed.

Saturday, July 28, 2012

"Thank you mommy"

Getting Ember ready for bed every night is no quick affair. In addition to the usual diaper change, pj-putting-on, teeth brushing I also put splints on either her wrists or her elbows. I try and alternate. She doesn't love them because they stretch her while she sleeps but she accepts them. Now that her hip surgery is over I have to add another bit to our routine. She gets knee immobilizers put on and then an ace bandage wrapped around mid thigh to knees like a mermaid. This is to keep her hips stretching while she sleeps. She is quite the bundle after all is said and done. So last night I was going through our routine and was just finishing wrapping up her legs. As I finished this little pixie voice says to me "thank you mommy." Be still my heart. I wanted to cry. Ember is an amazing little girl. The rest of our trip to/from Philly went well. Ember stayed comfortable during the trip and she is pretty much back to normal. We will need to return to Shriner's in about 4 wks. for a follow-up. Here are some pictures from Em's surgery.

After Ember was discharged she fell asleep on the floor and Sienna surrounded her with all their toys.

Saturday, July 21, 2012

update

I am going to make this a quick update as my internet access is not great. I have pictures but no way to upload them until we get home. Surgery went well. The first 24 hrs. post surgery were unpleasant. She was an angry and sore girl. She is back to herself now. She is to have her legs wrapped mermaid style for at least the next month. She also needed to be casted for a new prosthetic as well as leg braces but she has been too swollen. We will head back to the hospital Monday morning for that before leaving for home. Thank you for the prayers. We appreciate them.

Thursday, July 19, 2012

surgery day

Well, we made it to Philadelphia just fine. The hospital called and wants us there at 6:30. It is 4:00 now and I've been awake for hours. I have such a headache. I will be glad to have today behind me. I hope Ember doesn't have much discomfort. She is terrified of drs. Cant say I blame her. When we first adopted Ember she needed to have bloodwork done. I took her to the local hospital where after about 6 tries to poke her and find a vein they quit. We then went downtown to a bigger hospital where again they tried too many times to draw blood with no luck. We set up an appt to have Ember sedated at the children's hospital where they would then draw her blood. It took 2 hrs. for them to get enough blood for the tests. They were unable to use her arms or ankle area and were able to just get enough from her groin before they lost that vein. Oh I dread today. I hope they can find a vein. The anethesiologist agreed to sedate her first before inserting the iv. My poor girl. Please pray for no pain and for her comfort both physical and emotional. She just gets so scared around nurses and drs. and pretty much anyone who wants to look at her.

Friday, July 13, 2012

Happy Birthday sweet Sienna

Tomorrow - July 14 - my precious Sienna turns 3.  Still my baby, but not a baby anymore ya know?  3 years ago tomorrow morning was just another day.  I had a dr. visit scheduled but my due date was still a couple weeks away.  When I got tot he dr. I was told to walk right on over to the hospital next door and check in.  I had no amniotic fluid left and so labor would need to be induced. 
I was so nervous and excited.  I would be meeting my daughter soon!   There was so much I didn't know at that point.  So much I would learn. 
My labor was fairly easy and uneventful.  I could hardly believe I had a daughter.  She was so small, so beautiful.  My mom brought Sienna's 3 brothers to meet their new sister.  During that 1st visit was when my life turned upside down.  The pediatrician came.  He gave us the news.  Right there in front of my mom and my boys.  I'll never forget that feeling and to be completely honest those memories are still raw and painful.  Things went downhill from there.  Sienna had to be transported to the Children's Hospital by ambulance as she was having trouble keeping her oxygen up and maintaining her temperature.  They took my baby away.  Thad followed along to be with his new daughter.  I was alone.  I have never felt more alone.  More sad.  Crushed.  Devastated. 
I am ashamed of some of the things that ran through my mind those early weeks.  Personal, painful thoughts.  I also wanted to change her name.  "Sienna Hope" was the name we had picked out for our little girl.  The little girl of my dreams.  The Sienna that was born was not the little girl in my dreams.  Yes, I thought she needed a different name.  How foolish I was. 
3 years ago one of the best things in the world happened to me.  I had been given a most precious gift - although I didn't realize it for some time.  Sienna IS the daughter of my dreams.  My sadness over her diagnosis of down syndrome has changed lots.  Do I still get sad?  YES.  It is hard at times to see children similar in age - or worse - younger - doing things she isn't.  But you know what?  I have learned it is ok.  So what if she isn't where other children are?  I am immensely proud of her and her accomplishments.  My biggest sadness comes from the thoughts that other people will not give her a chance, will not appreciate the beautiful person she is.  I worry others won't really "see" her, they'll just see her disability.  Sienna is amazing.  I am so in awe of her.  She is just so full of sunshine and joy and stubbornness, and love.  Pure simple love.  She loves with her entire heart and soul.  I am sad that society won't see her that way.   I pray that people give her every chance she deserves.  She has something great to teach.  I am learning every day.
Happy Birthday sweet Sienna.  I am so thankful that you are my daughter.  My life is better because you are in it.
 

Tuesday, July 10, 2012

Is she able to stand on her own yet?

This morning I had breakfast with someone who asked me this question.  "Is she able to stand yet on her own?"  This question has been asked of me by her for months.  Every time my answer is the same.  "Not yet.  But she is getting stronger.  She'll get there, it just may take a while."  Today for the first time I am actually wondering if Ember will ever be able to walk on her own.  Because I am around her every day, and I take her to every therapy appointment I don't see the progress.  I know she is able to bear weight, and I know she'll be able to balance in a standing position.  But taking steps I'm just not sure of.  Certainly there are worse things than not walking on your own but I sure want that for her. 
It has been a bit of a crazy few weeks.  A little over a week ago I ended up in the emergency room.  For 24 hrs. I had the worst heartburn.  I was nauseous and could not get comfortable.  Well, it turns out my gall bladder is full of stones.  Large and small.  So, I need surgery.  I don't have time for that! 
Next week we will head to Philadelphia where Ember will have her hip surgery on Thurs.  Making decisions for her to have or not have surgery isn't easy.  I hope we are doing right by her. 
After we get home from Philly I will have my turn and have my gall bladder out on Aug. 2.  No one else in the family is allowed to have surgery for a while! 
I will leave you with a collage of Ember.  When we first met her in Ukraine she would try to get us to mimic her faces.  It was sort of coping mechanism for her I think.  A technique to sort of entertain and get attention.  She still loves to imitate faces and I must say she does quite well!  Monkey see, monkey do...

Saturday, June 9, 2012

Erie, adenoids, and hip surgery

Ember had her appt. in Erie. I am happy to say that I got what I wanted out it. I didn't expect miracles, I just wanted someone to say "they would try". We learned that for now we are on the right track and need to concentrate hard on gaining enough flexion in her elbows - either by splints or surgery - and Ember also needs to work on finger strength. Her fingers are very weak, and they are likely permanently fixed in a straight, rigid position. Dr. Cermak in Erie will consider Ember for a muscle transfer down the road if she develops enough muscle elsewhere to even transfer, and if she develops enough strength in her fingers to be useful. I am relieved. I wanted this option for Ember. Her drs. in Philly just don't want to consider that for her for various reasons so I'm glad to at least have another opinion and option for down the road.
Then, this past Thurs. Sienna had surgery to remove her adenoids and also to look at the tubes in her ears to see if they were ok or needed replacing or even whether she needed them at all. The adenoids went great. Ears not as great. 1 ear still had the tube in it, the other was gone. However, each eardrum sports a pretty big hole. One of them even referred to as "gaping". This poor girl can not catch a break on her ears. The ENT isn't sure what he wants to recommend for her yet. He says it appears that these holes are not going to heal on their own - that Sienna's body likes the holes being there. Big holes like that greatly reduce her hearing. She already has hearing loss. This is sad for me - children with down syndrome have trouble with speech anyway. They can be hard to understand. Lets face it, if someone speaks clearly society is much more likely to give them a chance. Clear speech = higher intelligence to many people. How can Sienna ever be expected to learn proper speech patterns if she can't hear well? Ugh. So, when we go for a follow-up we'll see what is offered.  We're waiting on approval her hearing aids.   Why we need approval is beyond me - the aids cost roughly $4000 and insurance pays a whopping $500.   Will the aids even help?  There is also surgery to repair the holes. It is a big surgery though and there are risks. What if we close the hole and she accumulates fluid again? Put another tube in and be back where we are today? I'd love to hear from anyone with experience with this
Lastly, Ember had a surgery date for her hips. I had hoped summer would be "quiet". At least as quiet and having 5 kids - including 2 toddlers with special needs can be. Nope. July 19. Ember will have her anterior hip releases in Philly on July 19.

Thursday, May 24, 2012

Worth it?

I am supposed to put a progressive splint on Ember's elbow for several hours each day. It isn't going very well.
She does NOT appreciate it in the least. Even with no tension on the splint she cries. No, she screams. Until I take it off she either cries or repetitively begs "off? off?" or "all done!" She just can't understand yet that this is meant to help her. All she feels right now is discomfort. Sometimes I wonder if the splint is worth it. Will it even matter? Will it work? Can I (and Ember) endure this for the next few months? Surgery is our other option. Would that be easier? Will we end up there anyway? I need a crystal ball.
I hate doing this to her.

Tuesday, May 15, 2012

Amazing

Look at this picture!!
I can not begin to tell you what a big deal this is and how hard this is for her. Normally she needs us to stabilize her rt. knee, or hold her arms - some type of support. I had been able to get her to stand alone for a max. of 5 secs. before her legs give out or she starts crying and panicking to be "all done!". I told her to stand strong so I could tie her shoe and she just kept standing! She stood alone for maybe an entire 60 or 70 secs. That is an eternity for her. I am so proud. She seemed quite pleased with herself! She is a miracle in the making. On another note - we got a letter in the mail yesterday from Shriner's hospital in Erie, PA saying that Ember has an appt. with their upper extremity orthopedic surgeon on May 30. I had applied for care there months and months ago and had sort of written it off but now we go soon! Go Ember!!

Friday, May 11, 2012

A visit to Shriners Children's Hospital

Ember and I just returned from a trip to Shriners. It had been 6 mos. since her last visit so she was due back. As always I get excited about the possibilities of these visits. I can't wait to hear from the drs. how well Ember is doing, how much progress she has made, and most importantly what we (they) will be able to do to help her even more. I came away from Ember's appointments feeling so frustrated. Let me re-cap her visits. First we met with Dr. VanBosse. He is the reason we travel all the way to Philadelphia. Among many in the arthrogryposis community he is considered THE "go to" dr. for lower extremities. I have been very satisfied with him. I trust his opinions on the path for Ember. He has always remained optimistic that Ember will walk. He seems to have a good balance between just enough medical intervention vs. not enough. His plan for Ember is to schedule anterior hip release surgery as soon as they have a place on the schedule. This will likely be several months out - maybe as many as 8 mos. He is a popular surgeon and in great demand. This surgery should allow Ember better control of keeping her legs underneath her instead of wanting to pull out to the sides. Her hips have quite a few contractures. She will probably need surgery on her rt. knee as well but we'll address that next year. In the meantime we will get our 2nd opinion here locally but I see us still staying with Dr. VanBosse.
The next appointment was with Dr. Z for Ember's upper extremities. Dr. Z is very nice. Great bedside manner. Seems to have Ember's best interests at heart. It never fails though that I come away from his visits feeling very discouraged, frustrated. He seems to be very "conservative" in his approach with Ember. There is nothing wrong with that but it frustrates me greatly as well. For now his plan is for Ember to wear a static progressive splint on her left elbow in hopes that she achieves a passive 90 degree bend in about 3 mos. At that time he will see if she has gained enough bend or if she will need elbow surgery to help get the bend she will need. This is fine. If we can avoid surgery I am all for it. But that is where my frustration also begins. He doesn't seem willing to look into anything that might give Ember better arm function - such as a muscle transfer. His reason is that her hands would be too limiting. Her fingers still don't bend - at all. They are stuck straight and will likely stay that way. However as time goes on she is getting better at pinching between her fingers and I believe she will only get stronger. I don't understand why that would limit his consideration into other treatment. I'm just not satisfied yet that Ember has so few options. I am sure we'll be looking for other opinions. These visits are so overwhelming for me. I try and remember to ask specific questions but it never fails that AFTER the appts. I have a million more questions. It is stressful to have to make such big decisions regarding which path to take. What is best for her? What will give her the best chance for better function? Will we make the right choice? I try and retain what the drs. are telling me, I take notes, but still I feel uneasy.
Medical technology has come so far in so many areas. It just seems hard to believe there are so few options for help for Ember - esp. her arms. I mean, there are robotics for everything these days, drs. can transplant almost any body part, so many promising advances. Why nothing to help Ember? Since Ember came home I have been tired. At first it was because we had to adjust to our new family member. Then it was because with 5 kids - 2 with special needs - I am busy. The girls have many therapy appts. each week on top of regular busy schedules. But it was more. My spare time is used differently these days. I research. I spend so much spare time at night when I should be sleeping researching. I read about what other families are doing for their children with similar conditions. I read about the best way to help Sienna learn or anything to help her reach her fullest potential. I read about Ember's possible options for improving her arm use. I read about what assistive devices will help her maybe walk. I read about where in the world - what dr. - will give her hope to be able to raise her arms. I am learning about how difficult it is to get Sienna's hearing aids working right for her due to her rare type of loss. And on it goes. Then I read blogs of other parents with children with down syndrome, or arthrogryposis, or other needs. Just so I can relate to them. I can see how others are coping and what decisions they are making and what is working, or NOT working for their kids. It is tiring trying to make sure these girls are given every chance for the best outcome. My head knows God is in control. He has a plan, His will be done... But I struggle with knowing what His plan is. Does God want me to continue to research so I find THE right dr? Does He want me to be content with doing nothing? There is a balance there but finding it is hard.
To move away from the subject of me wanting to "fix" Ember I am so glad spring is here. I love this time of year. Mackenna has his little flock of sheep and I enjoy that so much. I had always wanted to live on a farm as a kid. Mackenna being involved with 4H and raising these sheep is so great. The best parts are that he does most of the work but I still get to enjoy the sheep and also that this is something we can do together. I enjoy helping him get ready for the fair all summer long. It is also soccer season so I have the joy of watching him play at something he is good at and enjoys.
I worry a bit about the other 2 boys. I wish they had something they were really interested in or really wanted to do. They have smaller interests but it seems like so much of our lives revolve around either the girls and all their needs and appts. and Mackenna and his busy soccer schedule and sheep. I feel bad. I feel like I am letting them down somehow or not connecting with them as I should. Ember continues to just be a joy to have in the family. She is getting so chatty. She can have these big serious conversations that we can not understand - but boy she sure trys! I'm glad the girls have each other. I do think they will help push each other as well as help each other. They are both so amazing and I think they are amazing.

Tuesday, February 28, 2012

A long time

I can not believe it has been so long since I've updated here. Well, actually I can because I am terrible at things like this. I have such grand intentions but reality shows otherwise.
So much has happened since Ember's birthday. She is really doing well. She finally looks like she is putting on weight - she had been holding steady around 16 lbs. since we adopted her. I haven't weighed her but she just looks chubbier.
Ember is keeping me busy with therapy. Right now she gets 4 hrs. private therapy and 3 hrs. early intervention per week. Due to insurance though we are dropping OT for a while and cutting PT back as well. Totally frustrating as OT is so needed for her.
As far as how Ember is doing physically - I've seen great improvements in some areas and a disappointing amount in others. She is getting stronger in her legs and tolerates standing for very short times. She is afraid and that holds her back from trying too many things. Her core is still quite weak but she is getting there. Her prosthetic seems to be doing its job and she wears it daily without complaint. Her therapist does not want to use any sort of gait trainer with her and our walker attempts have not gone well. She can take steps with quite a bit of support on her legs and hips.

She still rolls to get around and since that both takes a while, plus probably doesn't feel too good on hard floor she spends most of her time sitting or asking to be picked up. I so wish for her sake she could get around better so she could at least try and keep up with her sister. It will come.
Then there are Ember's arms and hands. I admit to being so discouraged by this. She has gotten better at swinging from her shoulders and a little stronger at pinching small items between her fingers but that is it. She in my opinion has shown no improvement in using her arms in new ways. No active lift, no active bend, no ability to bend her fingers or grasp at all. Her elbows have gained some additional passive range but still not enough to reach her mouth by any means. I want her to use her arms so badly. I admit this has been a struggle for me to watch. I want to fix this so badly and I just can't. It is hard for me to envision how she will function in the future. I don't utter these thoughts out loud. But secretly I worry.
She is a happy generally easy going girl.
My other daughter Sienna has had some changes as well. Back in Dec. she had a sedated hearing test and her results were not what we wanted. Turns out she has pretty significant hearing loss. She has had tubes for 2 yrs. now and they are still open and working. This means it is sensory-neural and non reversible. So, Sienna now is the proud owner of hearing aids.


I was worried about how she would adjust and how I was going to manage keeping hearing aids on a 2 yr. old! Let me tell you - she doesn't touch them! What a good girl. I don't know if they are helping her or not. I can't say I've noticed a big difference but I guess we'll see.
Here are some pictures for "cuteness" sake.




I have so much to be thankful for. It is easy for me to wallow and focus only on negative things. Sienna's down syndrome brings about so many emotions for me. Oh how I love her, and I am so proud of her. It still hurts though sometimes. Hurts for her. She is wanting to talk now. She wants to but her brain just won't let the words out. I hurt for her. She is the single most loving person I know. She is unconditional and just an amazing soul.
When we adopted Ember I knew it wouldn't always be easy. But I knew it was right. She was meant to be ours. It hasn't been hard is many ways. She is a good girl who loves us and we all love her. She is affectionate and happy and adjusting so well. I want so badly for HER sake to have her limbs work. Well meaning people reach out to her for a "high five" or to hand her a toy and she can't move to take the toy or give a five back. I hear people say "poor little soul". I fight to not agree in my mind. She has tons of potential. But I to think "poor little soul". Like Sienna she faces so many challenges and battles ahead. That is my struggle. Watching my beautiful girls struggle. They are each so amazing and perfect in their own rights. I want everyone to see them the way I do. I don't want them to be hurt or to have to struggle with things most people take for granted.
Ember does not go back to Shriner's until around May so right now we are just focused on gaining everything we can through therapy. It will be interesting to see what the next course of action is for her - if anything at this time.