Saturday, January 30, 2010

Pretty Amazing xrays of Mya's femur growth and we are done!

This shows the progression of Mya's femur growing from Nov. 12ths surgery date to Jan.21... she is done growing the femur and now we wait for it to get strong... maybe early April to get the fixator off... Yeah Mya!

The lighter colored gap in the bone is what she has grown in each xray... the last 2 xrays are shots of her whole fixator which goes from her thigh to below her knee.

Mya and her legs- Look at how much her femur has grown

This Wed. is 12 weeks since Mya's surgery and we are done growing her femur on her left leg... yeah Mya! We did it! Now she will be in the fixator for about the same number of weeks for what they call consolidation... time to let the bone get hard... it is really an amazing surgery and process and she now walks with no shoe lifts at all. We still do her pt 2 times a day - and she gets roxicet and diazepam at least 30 min. before but she has been a real trooper and does everything I ask from her.... So this is in praise of all she has done ... Dr. Standard said the bone looks strong. He mentioned that with kids who have had polio their bone growth and strength can be affected by the polio but she has done so well with eating the protein and drinking lots of milk and calcium products .... I am very proud of her!

A boy and his dog

Luke was watching the movie tonite and decided that Willie need to be covered with his blanket too... Willie did not mind either

Friday, January 29, 2010

Guess what we had for dinner tonite?

I have been sick with strep since Tuesday and went to Sams Club tonite (first time out) and really did not feel like cooking so we had our donut dinner tonite... Anyone ever have a donut nite for dinner? The kids love it. We made coffee and hot chocolate and ate Dunkin donuts with cottage cheese ( that was our protein).

Gracie update

We have now been home 5 weeks and she is doing very well. She is a happy little girl who has fit right into the family... she still does alot of watching and observing but, she will enjoy being right beside all the kids . Her favorite toys are the ones she can make a sound with and she still loves shoes.... anyones shoes. At the consignment sale last week I was able to buy all my princesses shoes for very cheap and we have lots of clopping shoes around here. She sleeps thru the nite and will often take a 2 hr quiet time in the afternoon. She is eating well and gaining. The kids are working hard on getting her to speak... they pray often for her and just have her try to repeat after them. She actually does try and it seems like L's and H's are the sounds she makes easiest. I told the kids the first one who gets her to say momma gets 10 dollars and boy have they been motivated :) She is so cute because they show her that you move your jaw up and down to say momma ... and that is what she does when they ask her to say it... The picture with her holding bubbles and the pinwheel shows what we are doing to encourage her muscles in her mouth for speech... bubble blowing and blowing on the pinwheel. She can do it but I was surprised at how hard it was for her at first... she gets her hearing tested Monday but we do not suspect that is the issue.

She now loves the dogs and will often go up to them and will pet them... sadly a week and a half ago we had to put our beloved Annie down... she was our golden and was 17 yrs old ..... she loved all the kids and they her so it was a sad morning here that Monday. She was always especially gentle with the kids and she was usually the first one the new child went to....

Monday, January 25, 2010

Jenn and her family were up to meet the new ones and we have had fun...

Luke and Ella and Mya looking at our sea shell collection from our beach trips

Ezra helping to make dinner and Paul always makes pancakes at least one am for them when they come up....

Silly Mya, Ella and Ava :)

Jenn and Jeremiah meeting Andrew...

We have had company... and look what I bought at a huge consignment sale in NC

I went to Jenn's with Mary Kate last Wed... to go to a huge consignment sale in Raleigh, NC... I have gone before and you can get some great deals and I did...

I was mostly looking for baby items for Andrew to use. To encourage him to sit, stand and walk. I felt like I hit the jack pot. He has lots of things we can put him in to encourage posture and being upright....

We came home with Jenn and Ella and Ezra and Jeremiah came up Sunday nite ... We have had a great time with them and they got to meet Gracie and Andrew for the first time... it was a difficult wknd. for Andrew. We have weaned him totally off of his medicine they used to drug him. We gave him his last one forth of a pill Thursday nite and he has had some withdrawl symptoms... for adults coming off of this medicine sometimes they have to be hospitalized. He was so irritable and cranky. He did the same thing last wknd... after we reduced his pill again on Thursday nite... he refused to eat... and then gradually by Tuesday Wednesday he starts taking the bottles... and was somewhat irritable... but this weekend he was a sour puss for 2 days. His self inflicting pain behaviors have come back but they usually surface when he is frustrated and he was this wknd... he was much better today and ate for us....It really makes me mad that he has to go thru this because of being given a medicine that in reality was to drug him so they did not have to deal with him.... but now he is off of it.... PTL

In about 2 weeks I am going to try giving him melatonin to help regulate his sleep at nite. He has gotten better but some nites he still is up until 1 or 2 playing... even after a busy and active day.

Here are some pics of him using some of what I bought....

My kids often really try to take care of me :)

This is Isaac... he has seen Cate make me my breakfast many times and this am he decided to make me breakfast ,"just like Cate." He has such a servants heart and is very precious with his ability to love others... this am he fixed me pancakes with raspberries and you notice the tomatoes with them :) I love veggies and fruit and stress to the kids to eat at least 5 to 7 a day of them... so he thought mom should have tomatoes with her pancakes.... I love them just not together but who could deny this sweet smile...

Tuesday, January 19, 2010

True Compassion - A Challenge to you

In my devotions today I read something that got me very excited and I want to share it. It is titled, True Compassion. It is a story about a 4 yr old boy who saw his next door neighbor, an elderly gentleman, sitting on his porch, weeping after his wife's funeral. Without saying a word, he walked over, climbed up on the old man's lap, and just sat there. Later, his mother, who'd been watching out the window, asked him what he said to the old man. The boy answered," Nothing; I just helped him cry." That's compassion. This was a cute story and I can think of lots of stories to share about compassion myself but there was a sentence that led into the whole devotion that meant lots to me TRUE COMPASSION IS ALWAYS ACTIVE.

My challenge to you is what are you ACTIVE about that reflects your compassion or the compassion the Lord has placed in your heart? The devotion ends with this :

Walking with God on the road you never wanted to travel... interesting thought. We may not think or conceive of what we should do ourselves or even thought no never.... but having been there done that... it has been a glorious walk with the Lord....

Are you ready to step out in faith and become true compassion to this hurting world? BE ACTIVE- DO SOMETHING.... DON'T JUST FEEL SORRY FOR SOMEONE... SIT ON THEIR LAP OR GO HELP...ORPHANS, HAITI, OR WHEREVER THE LORD CALLS YOU... GO

Monday, January 18, 2010

Update on Mya and a thank you

She has been in her external fixator for 10 weeks now... she has grown her femur 2 inches or more because the last time she was at Dr. Standard that is what it was and that has been 2 weeks. I bought her a new pair of tennis shoes and they are the first pair in yrs. that she has not needed a lift put on... ptl. She is walking all the time now and so we are returning her wheelchair on Thursday at her next appt.. She still hates doing the pt that we do 2 times a day.. especially the bending of her knee. We have great numbers on all of her ROM (range of motion) and even though it is tough she is doing well. For a week now she is also free of a pinsite infection. She had one on one of her knee pins but it cleared up on the change of antibiotic .. we are hopeful that she won't have to be on it again (clindamyacin) she has also used Keflex and SMZ but they keep using stronger ones . They say to expect 6 to 8 pinsite infections with ex. fixators... we have had 3 or 4. She is on roxicet and lorazepam for pain and anxiety - given at least 30 min. before we do her pt... Luke was on all of these meds. for the whole time of his ex. fixator which was for a yr. and they come off of these meds with no issues usually... so we are expecting the same with Mya. We are thinking from the way her leg looks that she is at the end of her growth period... and then she will be in it for as long as it took to grow the femur for "consolidation"...that means we hope early April for her to have it removed. She has to eat and or drink lots of protein and calcium while we are in the fixator... she has been super at drinking milk and yougart and I make her fruit smoothies or milkshakes... as you can see she loves them !

Also we have a wheelchair that was my dad's that we can use if she needs one instead of the one we rented... since she really does not now use one all the kids have been enjoying it.
I was worried when we first did her surgery knowing that we were going to get Andrew and Gracie that it would be difficult. It was but I am so glad that we did it early . While I was gone our daughter , Leah was in charge of Mya. She had shadowed me and I had taught her how to do the pt and how to bath Mya and do pin care. Leah did a super job and has discovered that she enjoys and would be great in the medical proffession... She is a mature 16 yr old and is so tender but firm with Mya. She has been a great help and on nites like tonite when Paul and I have a date nite... she does Mya in the evenings for me and I am so grateful for her. I had such confidence in her ability and she lived up to it well. Molly and Mike drove Mya to her post op for me and Mary Kate and Keith managed the family at home while we were gone. Our friends the Livermoors from our church asked to have some of our kids while we were gone and another family the Nuss' invited Anna over...... so a huge thanks to them for all of their support .... WE LOVE YOU GUYS!

Wednesday, January 13, 2010

A prayer request from my daughter.. her inlaws are missionaries to Haiti

Our daughter Jenn and her husband, Jeremiah were in Haiti last August visiting orphanages as part of a missions trip... because their hearts were so moved by the sad plight of the orphans they are adopting from Ethiopia. They wanted to adopt from Haiti but Jenn is only 28 and both parents have to be 30 so they are adopting from Eithiopia instead... this is a blog post from her... the orphanages they visited were in Port au Prince and the one missionary Sherrie has not been heard from or no word on the kids.. if you visit Jenn's blog you can see pictures of the kids in this orphanage and our daughter in one of the pics.. please pray for them and the country of Haiti. Jeremiah's parents are in Florida and serve as a support to the missionaries in Haiti... please also pray for them as they knew the faces of these children and the missionaries and others that have not been heard from. Jenn's blog link is

Wednesday, January 13, 2010Prayer Request: Haiti
As you've probably heard already on the news...Haiti experienced a 7.0 magnitude earthquake late yesterday afternoon, just a few miles outside the capital city of Port au Prince.As I've seen firsthand from our trip this year, Haiti doesn't have the infrastructure or resources to deal with this catastrophe. My heart is absolutely broken for what I know my friends are experiencing right now.Here's an update, from those of you who remember my posts about our trip this year on some of the missionaries we worked with:We have heard that Dorothy Pearce, director of Faith Hope Love Infant Rescue is ok. We aren't certain of her orphanage and children and nannies yet.Marie Prinvall, another orphanage and school director is also ok, as well as her compound and children. Praise the Lord!We have NOT heard any news or been able to make contact with Sherrie Faussey, director of the school and orphanage in Port Au Prince. We have heard discouraging reports about the Delmas 31 area, which is where the school and orphanage are located.I'll post again whenever we hear something more about Sherrie.Some pictures of our trip this year..."Good" housing on a "good" day...Just some of the children at Sherrie's orphanage...They don't get any sweeter than this...Again, "good" houses on a "good" day in Haiti...Please pray.

He was crazy and we had the best time watching him

He seemed to like making everyone laugh too.

Andrew walking all over the kitchen :)

Tuesday, January 12, 2010

Look at how they are changing...

Andrew is walking all over the kitchen, Gracie is very comfortable with the dogs and even reaches out to them,

Look at how Andrew got up from his nap today.. he had totally turned his t shirt around and his shirt and took his arm out and got his sock off.. Paul feels he was never allowed to do these things and now is really enjoying just discovering how things work and how he can manipulate his environment... and we all love watching him do this.

Play therapy with siblings is really transforming Andrew and Gracie... you do not have to spend lots of money or drive to far to figure out some of what is needed for these kids.... the encouragement the other children have given to them has already made huge changes in their lives...

Saturday, January 9, 2010

This is how we like to think our little guy sleeps most of the time but keep looking :)

We caught Andrew asleep the way most kids sleep... he is so funny how he plays and finally goes to sleep in his bed... he loves to be under things... can you find him? Not until you look under the mattress... that is how we usually find our little guy :)

Gracie and Andrew update

We have been home 2 weeks now... Both the kids are doing very well. Gracie was at the doctors on Friday and she has gained almost 2 lbs with us. She is relatively healthy and the only 2 issues for now are to have her eyes checked because of the exotropia ( eyes going out occassionally) and to get her hearing tested.. just to make sure that she is not talking because of an issue with her hearing. She seems to not have a problem because she does respond and do the things we ask her but it will be good to make sure. She is in the minus 3 percent but we are not at all worried because so many of our children are just tiny in stature but huge in heart and effort.... she got some shots like Andrew and we will do some blood work. We got an air hockey board from Sams Club on Friday and she loves it... as you can tell. Andrew is eating more as I offer it... a typical breakfast for him is an egg, a piece of bread, a banana with some yougart and milk and rice or oatmeal cereal.. all of it is ground up and eaten in 2 bottles. Lunch is 2 pieces of meat, a baked potatoe, a slice of bread, vegetables and fruit with some spoons of cottage cheese with milk fed in 2 bottles. Dinner is ground up what we eat and then usually a sweeter bottle of a banana with animal crackers, applesauce and milk... so he is eating lots of calories ..just all thru the bottles... we will be at the cleft clinic team all day on Monday at Johns Hopkins... when I called last week they told me to bring him right in.... praise God for knowing our doctors so well. He will see many specialists on that team and we should find out some ways to help our little guy even more. He is doing well... we are weaning him off of the seizure medicine per our pediatrician and neurologist suggestion and he is doing well with that.
It amazes me how well the family is doing with the new ones... often Andrew is being held or played with by many siblings and I hear "I just love him or I am so glad you got him mommy." All the kids come around Gracie to help her or include her and she is loving the attention... Mya got a pair of princess slippers for her birthday.. and Gracie loves them... so does Ava.. so I will have to find some more for my little girls. Funny how they pick up on high heel shoes.. even Mya clops in them with her fixator on...

We had fun at Chuckie Cheese celebrating Ava, Mya and Paw Paw's b-day