Saturday, March 28, 2009

A new name....

Okay so I think it's time to change our blog name...we started this when we were 20 weeks pregnant with Jordan. We didn't know her name or anything about her other than what the ultrasound showed and what God's word promised she would be - a blessing, an arrow in the hand of a warrior, a heritage...
She now has a name (and has had the same name for 2 1/2 years) so it seems fitting to either change the blog to her name or come up with something more clever...
I consider this blog not just a place to update family and friends about Jordan's progress but also a way to post my thoughts and things going on in our family.
Any ideas? Suggestions??
Will you guys post a suggestion for a name or a direction to go with the new name? Post in the comments section if you have a minute.
Thanks! :) :)

Compass Kids Ministry Does it Again

Jordan and I were at the park across from our house enjoying a relaxing morning while Shan was inside with Noah. Suddenly we see a Dana Party Supplies van pull up to our house. All the kids stopped and watched. It was so fun. The delivery guy pulled out two giant balloon bouquets for Noah and Jordan. Jordan was jumping up and down as we took them inside for Noah. He was mellow still and not quite himself but he was super excited. They are really into Disney stuff right now so it was perfect. The balloons were from our church's kids ministry. They are so kind and our church has been so good to us. The week we found out about Jordan our pastors wife called us (they were in a similar situation with their daughter who was born with Spina Bifida), Care Team volunteers were at CHOC with us as they took Jordan in for her first surgery, they've provided meals, a one on one helper when Jordan was at church after surgeries, cards, encouragement, prayer and all kinds of support for us. They are truly wonderful. We are SO blessed to be a part of Compass Bible Church.

Here's a picture of Jordan with her last balloon bouquet when she had her surgery on her foot. I thought I lost this picture but found it today on my camera so I wanted to post it.
Thanks Compass!!!!

For a quick update -
Both kids are doing so well tonight.
Jordan has been fine since Thursday but Noah seemed to be getting worse yesterday. By last night he was so lethargic and just laying on the couch, sleeping. He had a fever of almost 102. The doctor said not to call unless he had a fever of 102 or higher so I didn't call but that paired with a weird cough thing he kept doing was making me nervous. He woke up much better this morning (he and I slept until almost 9:00). We stayed home all day, resting and then he slept for over three hours during naptime (I tried three times to get him up). By tonight he is suddenly back to his old self. He ate food for the first time since Wednesday. He had soft mac and cheese and a popscicle and finally took a bath. He was playing around with Shannon before bed and really seems to be doing great. I'm so glad. Because he's doing so well tonight we're taking the kids to church tomorrow. We have a ministry fair so if he's not doing well in the morning Shan can take him to the car to watch a video while I work at the tables. We are dying to get back to church! With three surgeries (four including Noah's) in five months we've missed a lot of things, Church being first on our priority list. I'm looking forward to a time with no surgeries, no recovery, no pre-ops and less therapy. This summer should be really great.

Friday, March 27, 2009

Recovery Day Two

A quick update for any of you checking in.
Jordan is doing fine still, of course.
Noah had a rough afternoon. He really needs his pain medicine (Vicodin) right on schedule or even a bit before and he isn't eating anything. He is only drinking Sprite. Today he finally had a popscicle but his hands were shaking so much. Tonight he has a fever and he fell asleep on the couch for an hour and a half. His fever is only100.5 so it's just a low-grade fever which is typical after surgery. I'm so lame - I forgot that I was supposed to be giving him an antibiotic so I hope I haven't caused any problems with him not getting it.
He's sleeping in our bed tonight so I don't have to get up to give him his medicine and so that we can hear him when he wakes up. Poor baby.
We're hoping that by tomorrow night or Monday he'll have turned a corner and be more like himself.

Thursday, March 26, 2009

Jesus Loves Me...on meds.

Here's a clip of Noah on anti-anxiety meds before surgery! Hilarious!

***** Scroll down to pause the music playing before you hit play on the video clip.

We're Home

Here's JJ joining Noah in the pre-op room - she was so happy to see him and they were having a blast together this morning.

They got to wait in bed together and even have their "happy medicine" before being taken for surgery. They were hilarious!
Noah wanted this truck with him today. He informed me this morning that he could only take the one truck because he didn't have enough hands to carry more than one toy. :)

Oh my boy!!!

Shannon took Jordan home so she didn't have to hang out the four hours after his surgery and also so she didn't have to see him after the anesthesia. Noah got to ride in a wheelchair just like his sister gets to. Although subdued he was happy to be in a wheelchair like Sissy.

We're home and doing well, thankfully.
Jordan's ear tube surgery went well, as expected. It took ten minutes or so and her recovery was very quick. Noah's took 45 minutes or so and his recovery wasn't as easy. When he started waking up from the anesthesia he went crazy! I've been warned before about this but honestly I was not prepared. They told me that they normally wait until that part passes before letting parents in but since we've gone through surgeries so many times they assumed I knew. Oh man! He was hitting, kicking, screaming, thrashing and it took two nurses and myself to hold him down. I tried holding him standing up and he kept throwing himself backward. The nurses and I were sweating (Shan had already taken Jordan home so he wasn't able to help) and the strange thing is that his eyes were closed the whole time. It was like he was having a bad dream or something. Thankfully they gave him Demerol and he fell asleep. He woke up a new kid. He laid there and watched TV so mellow and just kind of sad until we came home. He's talking a little bit and says his throat doesn't hurt too bad.
The doctor told us that his adenoids were so big that he couldn't see past them. He was quite surprised they were so bad/big. I'm REALLY relieved that we had the surgery done. Hopefully this will help him sleep better and eat better.
Well, Shan's mom is here and I'm going to lay down with Noah for a nap.
I'll update more in a couple days.
Thanks SO much for praying! I SOOO appreciate it and it's super comforting to know during anxious times that people are praying. :)

Friday, March 20, 2009

This is a first...

Tomorrow Jordan will have another set of ear tubes put in and she will have a special guest with her...her big brother. Yes the two of them are having surgery back to back starting at 7:00 tomorrow morning. They have the same Ear Nose Throat Doctor who was able to schedule them back to back.
Jordan will have ear tubes put in. It's relatively simple and quick with VERY little recovery time.
Noah will have his tonsils and adenoids removed. This is a fairly routine surgery with A LOT of recovery time. Thankfully the doctor offered a newer procedure for Noah. Instead of removing the entire tonsil he will cut them back as far as he can. There is a chance they will enlarge again later but the recovery is much easier and MUCH less painful. We opted for this since he's so young. We can deal with the full removal when he's older IF needed.
Jordan is set for 7 a.m. and Noah for 7:30. They'll be next to each other in the pre-op and recovery. It'll be weird since Noah usually comforts Jordan. This time they'll both need comforting. This makes me so thankful for Noah's health in light of Jordan's medical issues. The thought of caring for two uncomfortable kids, the logistics of it all and also double the cost of surgery seems like a lot to handle more than once. I don't know how our friends with triplets have handled all their special needs. I have SUCH sympathy for them.

Also you may have noticed the link on the right side of the blog...Pray for Stellan...this is a fellow blogging mom I follow. Her son has some pretty decent heart issues and could use prayer. Click on the link for Stellan, read her blog and pray.

I'll update the blog tomorrow afternoon.

Thanks everyone!

Tuesday, March 17, 2009

An Unexpected Visit with Dr. Jones and Our Xrays

The one on the right side is the leg with the bone graft taken. Look at the smaller bone (fibula) and you'll notice a piece taken.

Here's the view with the pin in - that's the way it currently is.

Here's a shot of the thumb before surgery - you'll see that small chip of bone that's not even connected to the lowest bone in the hand. That's why her thumb was short and of no use. It just moved all around and was just skin basically.

Here's another one I wasn't shown by the doctor...I'm assuming this is during surgery and it's after they opened the thumb but before putting the pin in...notice the black line in the thumb and also how the thumb looks longer like it's being stretched. I think he opened it, stretched it how he wanted it then checked it by x-ray and placed the bone and pin in after that. So interesting how they do this isn't it??

This the leg/foot they took bone from...notice the toe bones are kind of small on this foot. This is the foot that is most affected and was attached to her leg by her toes when she was born.

Today as I was getting Jordan dressed to go to speech therapy I noticed blood on my hand then realized it was on her sock so I took her sock off to find that her surgery site had opened up. Ugg. It was dark blood with some clear kind of stuff too and it just didn't look right. I called Dr. Jones who said to bring her in. We went to speech then killed some time at the Block in Orange before our appointment. Thankfully the bleeding stopped and she was still walking on it. He said that it wasn't infected and that sometimes surgery sites open up and if they do they can leak either just blood or also blood mixed with ________ (I can't remember the technical term for the fluid he was referring to). He just said to soak it often in a warm bath and to keep a bandage on it. He can't restitch it at this point so the scar will probably just not be as small or such a clean line as it originally would've been.
Another interesting thing...
Some of you know that I took a one day a week job working with infants and toddlers (and some school aged kids) who have a hearing loss. This is what my Master's is in and my credential and this one day position opened up, paying for our health insurance each month. I don't love leaving the kids each Wednesday but God has been VERY gracious to me in providing a job I really like. I've also had so many opportunities to really relate to these families who are struggling through the early years of caring for a child with special needs. One 2 year old I see is only days younger than Jordan and is also affected by Amniotic Band Syndrome in such similar ways (hands are similar and one leg but not her face - no cleft). The mom is my age and I just really enjoy working with her. Another mom has an 8 month old baby with Auditory Neuropathy so she is in the very early stages of grieving and adjusting to things. It's been more than great to be able to encourage her and really truly relate to and validate her feelings. She is such a joy to be around. So to get to the reason for all this info on today's posting...
Another mom is a Christian and has a very involved daughter who is also close to Jordan's age. Her daughter has life threatening issues and requires constant care and surgeries. I can't relate to this mom in the severity of her situation but it is nice to see God working in her life providing so much for her in times of need. I was talking to this mom today on my way to Dr. Jones' office and found out that she also had an appt with him - at the same time I did today. It was the strangest feeling that someone I work with, provide a service to would be at OUR Dr. Jones' office. I love that my two worlds come together all the time. I like that it gives me an opportunity to better understand these families' situations but also it helps them to understand that we can relate. God has given me a job where my struggles can be used and I can really truly relate to the women I work with and I am so thankful.

Thursday, March 12, 2009

Scroll down to see all new posts...

For some reason my posts got so out of order...bummer. They're backwards by order of the time they happened. Here's one more video and a little note letting you know to scroll down to see today's update on Jordan's doctor's appt with pictures of her new thumb.

Thanks for checking in!

More Pictures...

My step-dad loves trains and so does his friend, Norm. We got to see Norm's own train museum in his basement and Noah about had a heart attack. It was amazing! This is such a brief glimpse of Norm's train hobby.

Noah digging for dinosaur bones at the science center - yes those are goggles. Cute!

Jordan didn't love the museum as much as Noah because it was harder for her to really do the hands on stuff and she's a bit young for it but she did like a few things.

Noah LOVED the Air and Space Museum. He totally got into the space section and now is the proud owner of two toy space shuttles, thanks to Gma. Jordan picked a bouncy ball but I picked out a book about Amelia Earhart and the world telling her she couldn't do things all the while she proved them wrong. Someday Jordan will appreciate it I hope.

Our trip to the East...

I wanted a vacation from our hectic life and Jordan was in need of some distraction so we headed to my mom and stepdad's house in Maryland. It was a great week for them to spend time with my family. Shannon had school work and work-work to do so he stayed and I took the kids by myself. The flight went SO well and the kids were excellent. I don't have a single complaint about the travel. It was actually totally enjoyable and I loved spending the time with them.

At my mom's we got the kids' hair cut, we took them to the Baltimore Science Center, the DC Air and Space Museum, we had a family party with their cousins and mine over and they got to play in snow, build a snowman but also enjoy nice warm weather most of the time. It was such a great time. Thanks Mom and Dennis!!!!

What a fun night!!

Jordan's ALL TIME favorite thing (next to eating) is her bath. We were actually able to get a waterproof cast today so she could take a bath. My mom offered to pay for it (insurance won't cover it) but thankfully they had a sample for us to use. I honestly cannot put into words how happy this makes me!!! Life is so much easier and so much more fun for Jordan.

There's the cast!

They stayed in the bath for over 45 minutes

and Jordan cried and cried when it was time to get out.

This was her first time standing tonight.

She's mobile once again!!!

Today was Jordan's four week post-op appt with Dr. Jones. He took the casts off and checked her leg where they removed bone and also her thumb where they pinned the bone in to stabilize and lengthen her thumb. Right away when they took the cast off her hand Noah gasped and said, "It looks different Mama!" It was really cute. He was super involved, sitting up on the bed with us watching everything. When she was doing her usual freakout about the cast saw he kept saying, "It's okay Jordan, it won't hurt you." He kept rubbing her head and her hair when she was crying. At lunch afterward he said he wanted to sit by Jordan because she's his friend. I am constantly seeing good things come from a hard situation and it's so encouraging.

So the doctor was hesitant to leave the cast off her leg. He would've like to put another one back on but I couldn't bear it. When I told him she had a leg brace she wears all the time he was relieved and said because of that he would feel good about leaving the cast off. He said to be very careful of her leg (no jumping off the couch) but that she should be fine walking. She wouldn't walk in the office (no surprise) but thankfully is already walking all over the place.

Her thumb is close to twice the length as before. It won't bend but it'll give her a pincer grasp.

This scar is much bigger than we expected but well worth it.

It is almost a normal length for her hand! Yay!! Isn't it beautiful????

Isn't this picture funny? It's like the saying "A picture is worth a thousand words."

As much as I couldn't stop looking at her wonderful new thumb Jordan apparently didn't share the same sentiment. :) It was painful for her without the cast because she'd naturally try to move it and I think it's traumatic to see the stitches etc. (Noah asked why it was black too)

This surgery/recovery has been unusually hard for me and I think it's because the surgeries have been back to back - five surgeries in 28 months. I know families who have to get their kids through 5 surgeries in two months but this is still a lot for me. I am really looking forward to next spring - very little therapy by then, if any, and no more surgeries until Jordan's five or so (she'll have one more at three years old). We can be a normal family with our focus on typical fun things and Jordan can have the hard work behind her.