Tuesday, March 20, 2012

The Plan

Yesterday was an important day for Noelani.  We went to the Children’s Hospital in Denver and met with a slew of Dr.’s to come up with a plan of action for her repaired cleft lip/cleft palette.  
Noelani is very aware that her teeth and her lip is different than other people.  Her teeth are a mess.  There are two in the roof of her mouth, and others that are in the wrong place in her mouth.  Even thought she couldn’t understand most of what we talked about, she understood that she will be getting her teeth fixed, and that is very exciting for her.

I didn’t know, but often children with cl/cp have other problems associated with this defect.  One problem is usually in the ears.  There was good news and interesting news in this area for Noelani...no fluid in her ears, which they see a lot.  That is great.  However, she does have “mild” hearing loss and might have been born with it.  That was the interesting.  However, also good, she may not need any thing (hearing aids or surgery) done since she seems to be doing so well.  The one concern is that her language development, her ability to say letters and sounds, is not very good, and there is a question that the hearing loss might be effecting that.  
So the plan....
-get a healthy mouth...that is going to take some time.  She needs some teeth pulled, braces, and a bone graft surgery.  
-The most important next, but more immediate step is speech therapy.  We are meeting with a lady on Thursday.  
I am really praying for the LORD’s leading in all these area’s.  There are so many puzzle pieces that I’m still not sure of, yet, we have a plan and I remind myself often of the LORD’s advice in the Bible; “Do not be anxious about tomorrow...”  Today has enough to deal with.  I get so stressed when I start trying to “take care” of all my troubles right now.  May be my “plate” seems so full because I take on problems and things that do not belong to “Today”.  
I know I haven’t written much about Clive.  I will be catching up on my newest little man soon.
Thank you for your prayers and thoughts for us.


  1. So wonderful to have a plan. I was anxious to hear the big news. Such a learning curve with these older kids. Love the genuine smile on Noelani's face. Precious girl!

  2. How exciting! Jailyn has two teeth on the roof of her mouth also. And at about Noelani's age, Jailyn, will be also be having the bone graft surgery. It's a rough one - but has amazing results! Praying for y'all as you meet with a therapist!
    FYI - love the turtle pics! Fun! :)

  3. Shonni,
    I am so glad posted about this. We will be doing much of the same when Ashlyn gets home and I really have no idea what to expect. We plan on surgeries and braces and speech therapy as well. We know that Ashlyn does not have clear speech and from recent pictures we received from the orphanage, it is clear that she too is missing some front teeth. Keep us posted on how it's going!

  4. She is so beautiful!

    Jadon had fluid in his ears until he was about 3 1/2. When he was 2 1/2 he had tubes in his ears, but hasn't needed them since. He has borderline hearing (still in the normal range, but just barely). He can speak pretty clearly, but isn't always motivated to make the effort! He had his bone graft in 2010. I'm happy to help if you have any questions.

  5. we have a cleft team appointment in a couple months for our daughter, Sami. looking forward to knowing what to expect down the road.

    your daughter looks so beautiful in this picture. hoping you are having more and more good days. we had a really bad one a couple of weeks ago, but today i saw some improvements...praise God!

  6. Praying with you!!!! Leaving it for Jesus to handle sounds great, but it is hard on mommy's and daddy's too......

  7. Wow, she looks beautyfull!!! Her Haircut is perfect!!!Even if you don´t see it from your position, but from the pictures we can see how she is getting a new little person.Beautiful!

    And, yes I know this problem with the "plate".
    But I think it is a sign of a loving mother...
    But HE is it who brings us persons and situations in our life to learn to give it all to him.
    He loves us so much.
    You´re doing a good job. And our father will bless you

    Greetings from germany


  8. Great you are getting a big picture plan on things to do to help her. We are in the middle of the plan with Tessa..it's quite a long haul, but even though she is struggling in so many areas, she does seem to appreciate the improvements to her lip/nose/teeth. Tessa does not have hearing "loss", but it is quite clear she has some auditory processing issues that have contributed to problems with communication. I know you are familiar with Dianne Craft...the information about the "auditory learning gate" she shares has been very helpful to me in sorting that out. If you ever are looking for something for home, the Earobics software was very helpful for Tessa....in fact, I regret that we didn't buy it within the first months home. The Christian book distributors have it at the best price right now from what I have seen. Whether auditory processing disorder/hearing loss...I think Erobics could help with language aquisition and reading much better then our English language software ever did. Blessings, Jennifer

  9. We take our son to the Childrens Hospital in Denver for Cleft and love the doctors! They will do great things and comfort you along the way!

  10. Praying for you guys and for Noelani!


  11. My daughter came home at four years old - five years ago now. She had a "repaired" cleft lip and palate, but we faced these same surgeries. She has now had three sets of ear tubes (but I think her Eustachian tubes are finally large enough to drain), two pharyngoplasties due to hyper-nasality (finally a good tone and ability to make those "p" and "g" sounds), her bone graft and lip revision, and several stray teeth removed surgically. We have now graduated from speech therapy as well :) Now we wait for a couple of years before the maxillary advancement surgery that many need. Your daughter is beautiful and I would be glad to answer any questions "mom to mom" about what lies ahead with the surgeries. I remember feeling so overwhelmed and afraid of the journey once I realized how many procedures were ahead.

  12. My guess is the hearing loss is from untreated ear infections in the early years. That was the case with Avery. She still has tubes, and has had over 10 sets in 4 years. Cleft kids can outgrow the need for tubes just like other kids, but it is usually much later. I'm not a Dr, just stating observances=). Avery had the bone graft last week.

  13. I'm glad she was so okay with the doctors and the consult and the prospect of getting things taken care of. I wanted to ask you a question... we're adopting from EE. She's 5 now and I wanted to make her first name her middle name and then give her something new as a first name. How did that work with Noelani and Clive? I remember you saying you'd like to change their names if they would accept the new names but I don't remember you saying anything about the transition from old to new. Obviously those were some crazy weeks, but looking back on it, how did you guys do it? Did you actually ask them for their approval or just say "here it is, your new name". Thanks for your help. You guys are awesome.

  14. So happy for Noelani as she begins this journey. Just take it one step at a time- otherwise it can feel overwhelming.

    Anna is in speech and it will be awhile before she graduates- she also has hypernasality - and will need surgery for it, along with orthodontics soon and her bone graft- it's too much for me to think I could be in control; of all of it.

    The children are lovely just the way they are and their progress is in God's hands!!

    Blessings to you dear friend!!

  15. I adopted a child with cleft palate, lip, hole is skull, club foot, missing and fused fingers and toes and webbing on her neck. With her cleft, we are up to the point where she needs braces. They were pushing to do her much earlier and then a second set but my wallet vetoed that! Plus she doesn't need to go through more than she already has. She's been through many surgeries for the different needs. But she is a blessing and a joy.

  16. Great plan!

    Hearing Aides have been amazing for our hard of hearing son, really great, they make them in fun kids designs, or small and flesh tone so you can't see them- lots of options...if you choose to do it, just make sure you find someone that specializes in peds hearing aides and mapping the hearing aid...he has been home with us 3 years and we only have had one hearing aide that was remapped at one point, then the molds can be changed, but keep the same aide.
    I am happy to help if you guys want/need more info on it in the future.

    SO glad she is doing well over all!


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