Okay so some updates...

Yesterday (5/22) I took Jordan to have her Upper G.I. (checking to make sure her stomach and her throat are all working fine). They said everything looks fine but it seemed that the barium took a long time to move from the small intestine. No big deal - we'll find out more details at her follow-up appt. They also did a swallow study, where they had me feed her rice cereal mixed with barium while they used an x-ray machine to see what happens to the food as it goes into her mouth (does it go up into her nose, does she breathe it in, etc.). She did great! It's kind of weird that the first time I'm spoon feeding her is while she's strapped to a chair with an x-ray machine and five people watching. She was a champ! She was so tired yet still drank that barium down - even while it was pouring out her nose since they had her drink lying flat.

Today (5/23) we took her to UCLA to meet the infamous Dr. Neil Ford Jones. He asked detailed questions, looked at the x-rays, and said that he's "willing" to do the surgeries. When I asked him if he could honestly say that he is the confident that he can do this he basically said that he is competent but not confident. I can appreciate that. As for the original "plan" to remove her thumb, Dr. Jones says no way. He and his residents said absolutely not to remove the thumb. They said that she has enough muscle to grip and that they wouldn't even consider it.

Here's the new "plan" as Dr. Jones sees it (the best that I can summarize it):
Around 1 year - He will separate the index and middle finger of her "bad" hand (look at the third picture down on the last blog I posted). We will hopefully coordinate with the UCLA Cleft Surgeon (Kawamoto or Bradley) to do the palate through them at the same time. Dr. Jones will also separate her toes then (poor prognosis though becuase toes tend to reattach after time).

Closer to 2 years old - He will monitor the amount of use and movement she has in those two fingers. His best guess is that they won't be of much use and will just "get in the way." He's thinking he may then have to remove them (yes, remove her index and middle fingers) and she will use her pinky and good thumb (on her bad hand) to pinch with. He will also, at this time, probably use a bone graft to add length to her short thumb on her good hand.

I know it's so confusing and hard to explain. Explaining it in person is much easier.

That's our update for now. We're tired and it's been a long day but we wanted to send a note for those of you checking in.

Oh! I almost forgot - we went to lunch in Westwood Village today (so fun) and little Jordy sat up all by herself in the highchair! Yay! Such a big girl!!! She loved chewing on the edge of the table and her plastic spoon we've been letting her chew on while she's gearing up for the big feeding of rice cereal she's about to get...finally!

Praise the Lord for He is GREAT!

We did not have one single hitch in our insurance approval for Dr. Jones at UCLA (for those of you who know anything about our story so far with insurance and doctor hassles, you know that this is a feat only the divine could handle). I have spent literally three hours a day on the phone fighting doctor's offices and insurance companies for weeks at a time for each procedure Jordan has had done. I have had complete meltdowns, crying on the phone with these people who refused to help me and who had no clue what they were doing. We have a case manager now who is helping us through this and a pediatrician's office who gets things done.

Okay so get this! The minute I got the approval for little Jordan Joy to see Dr. Jones I called his staff to set it up. The woman on the line said the soonest she could do was July 12th! That is two months away and from what I've read, there could potentially be a timeline that these surgeries need to be done by. What if we wait two months to see him, he can't do it and we have to start all over again? Not possible. She connects me to another woman in his direct office who puts me on hold. While I'm on hold I'm returning emails, surfing the internet, etc. Finally it dawns on me...Sarah Cox, at my shower did a devotional on 1 Thessalonians 5:16-18 "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." She camped on the verse - "pray continually" which means to pray persistently (imprudently, urgently, with audacity, earnestness, boldness and relentlessness - taken from John MacArthur's Bible Commentary) for the big things and the small things. I decided to start praying right then, on hold, for an appointment next week. The first thought I have is, "Maybe I shouldn't be greedy. I should probably just pray for an appointment sometime next month. I should probably just pray that we will get an appt. sooner than the July 12th appt." But NO, I started praying specifically that God would give us an appointment NEXT WEEK, knowing that would be next to impossible with this doctor's schedule.
Can I just say that you will all need to be praying for Dr. Jones' wisdom and discernment next Wednesday morning at 10:30???!!!! Yes - we have an appointment for next week.

This alone may not prove the power of Christ to you (who do not believe) but I am telling you as one single example of God's divine and loving hand in our lives. Constantly throughout our struggles with Jordan, God's gifts of compassion and mercy have been evident. These are the tangible benefits of a relationship with our Creator in the same way that our JOY and peace through the difficult times are. Again, I'll restate that our Joy in Christ does not guarantee that we'll be without trials and sadness (obvioulsy) but that our hope lies in much more than this life and also the fact that He is in every detail of our days.

I'm going to continue praying that every person reading these blogs will someday, in this lifetime, see God as their Creator and Jesus as their savior. When you do, be sure to email or call me to share the blessings in your life too.

Thank you for reading this and for always supporting and encouraging us!

Jen

As an update...

We met with Dr. Moskow today. He was so great! He was compassionate yet competent and was humble enough to admit that he is not able to do the surgery on her hands. We told him about Dr. Neil Jones (UCLA), who we've heard fantastic things about, and he suggested that we try him next. He's concerned that we are going to have a hard time finding someone able to do it. Our case manager (insurance) told us today that we can try Dr. Jones and if he can't do it then we can try the next option (????). They even said that if there are no doctors available within driving distance that insurance would, as a totally last resort, pay for us to travel - Praise God.

It was a pretty stressful morning but I came out of it feeling so much better than before. We finally got to see x-rays (we've been asking for them for a while) and now know what bones are there (or not there). I also came out of it really able to give this decision up to the Lord who already knows the end result. It's easy to start putting my trust in doctors rather than the Great Physician who can do so much more. I started to feel like Jordan's fate was in Dr. Moskow's hands this morning but came away seeing our visit with him as a blessing and a reminder that God is in control and that there are doctors out there who care for us as people and are seeing this as SUCH an important decision for Jordan. Dr. Moskow reminded us that her hands are never going to function or look "normal." We realize that but are working hard to give her the best results possible.

Please pray that Dr. Jones will look at Jordan's reports and x-rays and will know whether or not he is the best one for this surgery. If not, our personal second choice would be to see someone at (or someone who has been trained at) the Hand Center in Louisvill, Kentucky. The first hand transplant was done there but I'm not sure if anyone works on babies or who that would be. Please pray that we will feel confident with whomever God has chosen for little Jordan and that the right surgeon will do this for her at the right time and also that we will be able to pay for it and manage all the details (travelling, juggling commitments at home and work etc.).

Our new pediatrician's office has been a GIANT blessing too. I'll give a little plug for all of you Mommies reading this. It's TLC Pediatrics in San Juan Capistrano - we see Dr. John Carruth. They have a totally efficient front office staff, a great referral coordinator and their nurses know our names and return calls within a few hours.

Anyway - I will be posting some clear pictures of her hands soon.

Thanks for reading the lengthy posts.

Love, Jen

Just a brief update with a few prayer requests and a few praises...
Jordan is doing well. Her therapists and infant specialists say that she is within the 7 - 9 month range in everything except those areas that have been affected by her physical limitations since birth (including Reflux, surgery, limb differences, etc.). They are not suspecting cognitive delays at this time, thankfully.

Her Gastrointerologist wants to do an Upper G.I. to find out why she's still spitting up so much and also a swallow study before we start spoon feeding so that we can know if she'll aspirate the food and if there will be any other problems with eating since the palate is still open (she has very little roof to her mouth).

She has another ear infection but were treating it with drops this time which is better than oral antibiotics.

Her current Orthopedic Surgeon said that his plan so far is to remove her short thumb on her "good hand" and move her index finger down to act as a thumb. She would then have a four fingered "good" hand. Her more affected hand has a great thumb but many problems with her other fingers. He hasn't said what he would do with that yet. We've requested a second opinion with a doctor at UCLA (Neil Jones) but our HMO is sending us to a local doctor (Lonnie Moskow) who may be just as great. We're praying that if he isn't confident in his ability to do the surgeries on her hands that he'll be able to tell us so that we can find a doctor who can. We are confident that God has the perfect surgeon picked out for her, regardless.
Be praying as we meet with Dr. Moskow on Wednesday of this week.

Gotta run...I'll post more pictures and video as well as a surgery update after our next appointment.

Thanks for being faithful and steadfast in praying and checking on Jordan Joy's progress.

Love, Jen

Here's our first video clip of Jordan. It's nothing too exciting - we're just trying to figure this out.