Important Cleft Team Appts. Coming Up

Luke is doing great!  He has recovered nicely from his surgery and he is back to normal.  He is getting a little bored in school, but we have only about 5 weeks left, so he's hanging in there.

Tuesday, May 15th is a big day for us, especially Jacinda.  Both girls have appointments with our wonderful Cleft Team (Surgeon, Orthodontist, ENT, and Speech Pathologist).  Here's what will happen for both girls:

Kenzi ~ Her lip looks AMAZING.  I'm sure her surgeon will be thrilled with how it has healed.  He will take a good look at her palate and we will schedule her palate repair surgery.  She acts sometimes like her nose on the cleft side hurts, so I'll be asking the surgeon to see if he can figure that out.  She also may have another hearing test to see if the hearing loss we found last time has resolved with the ear tubes.

Jacinda - She will see the regular cleft team.  But the big deal for her is speech.  There is a wonderful Speech Pathologist that works with the team and she will evaluate Jacinda's speech delay to see if we can figure out what's going on.  Then Jacinda will be seen at the VPI Clinic.  VPI stands for Velopharyngeal Insufficiency, which means that air escapes through the nose during speech.  She will have a scope procedure to see if that is what's happening.  I hear that this procedure is not pleasant ...... they put a scope down her nose to the back of her throat (with no anesthesia) and then have her say certain sounds to see what the back of her palate is doing.  Depending on the results of that procedure, we will discuss our next steps.  Our next step will involve either another surgery, or specific speech therapy with a cleft-specialized   speech therapist.  The surgeries for these issues are fairly complicated and hotly debated in cleft circles.  I'm really hoping we can avoid even going there, honestly.


As you can see, Tuesday will be a big day for us.  We have given Jacinda's speech delay a lot of time to see if it improves and we are ready to get aggressive.  She starts preschool in September and we want her to be as successful as possible.  We had her IEP meeting earlier this week and she has made a lot of progress this year.  She also is clearly very bright, but we aren't seeing her true potential because she can't always express herself clearly.  I think her self-confidence will soar once her speech improves and we'll get a truer picture of her personality.


If you are the praying type, here are some specific things you could pray for:

• That all of us would be healthy for Tuesday's appts.  We had to cancel last time because both girls had strep and Aaron and I were pretty sick as well.
• That Jacinda would cooperate with the scope procedure.  It will not be pleasant, but it's so important.  I may have to promise to buy her a pony!
• That Aaron and I would maintain clear heads so we can discuss the best course of action for both girls.
• That I would remain calm and not overwhelmed throughout the long day.
• That the girls would be generally happy ..... it could be a very long day at the hospital.

I will definitely update once we know more.

This and That

Hmmm ... I should really start keeping a list somewhere of all the things I think of to blog about.  When I finally sit down to write a post, I can't think of a single thing!

Luke ~ He is recovering so well.  He heads back to school tomorrow, but he won't be able to do PE for a few days yet.  He has a follow-up appt. with his surgeon next Tuesday, which is when he'll be cleared for normal activity.  He's been eating burritos like crazy!  At least burritos are soft, and healthy!

He can't wait to be able to play T-ball again!  The season had just started and then he had surgery.  This is his first T-ball experience and he is excited!!!

Kenzi ~ She says more and more every day!  Her sleeping has been an issue.  She sleeps OK if she sleeps in our bed.  We don't mind it that much, but she moves around so much and we only have a Queen size bed.  So we aren't sleeping that great.  We're trying to get her to sleep longer in her bed.  Not to start a cry-it-out debate, but we don't let our kids cry.  Plus, with adopted-as-toddlers kids, we don't want to cause more trauma by not going to her when she cries.  So this is a pretty tricky situation.  The bottom line is that we all need to sleep better and sleep longer.  That's what our goal is.

Jacinda ~ The other night, her face had a run-in with the corner of her dresser.  Thankfully, there wasn't much blood.  Her plastic surgeon has told us to call him any time of the day or night if she needs stitches and he will meet us at the children's hospital.  Before I could get a good look at the cuts, I had it all already planned out in my head that we would call him, head to the hospital, and be there half the night, but thank goodness, we didn't need to do any of that!!!  She has 2 small cuts on her face and I'll treat them with Vitamin E once they fully heal just to minimize the chance of scarring.

Luke's Surgery

A few days ago, Luke had his tonsils and adenoids out.  He's been a real trooper.  He hates the Tylenol w/ Codeine, but he understands that it really does help.  Each day, he seems to feel a little better.  He's having a great time playing computer games, watching TV, and eating ice cream!

His teacher has been wonderful with sending work home for him.  She also had everyone in the class make a get well card for him!  His Report Card was EXCELLENT.  He had sort of a rough start with transitioning to Kindergarten and we're so proud of him for hanging in there and doing so well.

Kenzi ~ She is saying and signing new words every day.  I can't believe she has only been with us for a few months.  I can't really remember when she wasn't here!

Both girls see the Cleft Team on May 15.  Kenzi will have her palate repaired this summer.  Jacinda will have a scope procedure on May 15 to see if her palate is affecting her speech delay.  The results from that procedure will help us determine where we go from here.  There are a couple of different surgical options and a specific type of speech therapy is also an option.  We're so ready to find out our next path for Jacinda.

Happy Easter!

Happy Easter!















A rare picture of all 5 of us!!!!















Updates:

• Luke is having his tonsils and adenoids out this coming Tuesday.  We're getting ready ... stocking up on library books, Gatorade, popsicles, and other soft foods.
• Kenzi is doing great in speech therapy.  She is saying all kinds of things now ..... hi, bye-bye-, uh-oh, hat, hot and signing more, milk, all done, and help!  She is getting more and more comfortable around other people and she even stayed with Aaron's parents for a few hours!

Funny How Things Work Out .....

We were so disappointed that the girls didn't get to go to the Cleft Clinic yesterday.  Kenzi would have had her palate repaired in early May and Jacinda may also need another surgery around the same time.  Now, we are looking at July for those surgeries.

Luke saw an Ear, Nose, and Throat doctor today for his recurrent strep infections.  The ENT wants the tonsils out ASAP.  So on April 17th, Luke will have his tonsils and adenoids removed.  He will miss school for possibly 2 weeks, but he's ahead in a lot of things in school right now, so it will be fine.  We'll get his work beforehand and he'll have things to work on while he's recovering.

So now we can get Luke well and then focus on the girls over the summer.  The surgeries for the girls are not affecting their health, and Luke's is, so his is more important to get done quickly.  So I'm glad we've been sick and had to cancel the Cleft Clinic for yesterday.  God sees the big picture and everything works out the way it's supposed to.

Speaking of being sick, we're all starting to feel better.  Of course, we had to finish it all off with Aaron going to Urgent Care last night with a pretty painful ear infection.  No one has had a fever today!  Thank goodness!!!!  We're back to our routine, although I'm still pretty tired, so I need to balance getting better with getting back into our groove.

Change of Plans

We were so looking forward to the Cleft Clinic appointment for both girls on Tuesday.  Kenzi was to get her palate repair surgery scheduled.  Jacinda was to get a scope done.

Unfortunately, both girls are sick, so we have had to reschedule for May 15 :(  I was so hoping that everyone would wake up this morning refreshed and feeling better.  Instead, both girls were feeling worse, so off to the doctor we went.  Jacinda tested positive for Strep.  Kenzi was negative for strep, but there's still a chance she has it since she has the exact same symptoms as Jacinda.

So May 15 is the day.  I'm disappointed, but I also know that things work out exactly as they are supposed to.  It will all be fine.

Luke has an appointment this Wednesday with an Ear, Nose, and Throat doctor.  I'm hoping they will be open to a tonsillectomy.  I also think he has some seasonal allergies, so we need to get those under control, too.

Updates, Updates ....

Once again, I know it's been a while since I've updated.  Here's what's been going on since the last post.

• We have all been sick.  I have a spreadsheet with everyone's fevers and medications!  It's hard to keep track of for 5 people.
• On that note, Luke has still been having a low-grade fever, although his latest strep tests have been negative.  Yesterday, he had bloodwork done and a sinus x-ray to check for a lingering sinus infection.  The x-ray was normal and so was the bloodwork.  Thankfully we didn't have to wait long for the results.  He has an appointment with his Cardiologist next week just to check and make sure his heart murmur isn't causing any problems.
• Kenzi was supposed to start speech therapy 2 weeks ago, but someone in the house has been sick since then, so we've had to cancel twice.
• Tuesday, March 20 - both girls have appointments at the cleft clinic.  I'm really hoping they are both over their sicknesses by then.  Jacinda will have (hopefully) a procedure done that day that will tell us about her speech delay.  I hear the procedure is not pleasant.  I keep joking I'm going to have to bribe her with a pony!
• On St. Patrick's Day, Luke ran a race called the Operation Smile Final Mile.  It's part of the Shamrock Marathon weekend, which is huge in our area.  The kids run 25.2 miles during the school year, and they do their final mile during the event.  They also raise money for Operation Smile.  Of course, this organization has a special place in our hearts.  Luke can explain that our health insurance paid for surgeries for his sisters, but not all kids have that.  So the doctors can help those kids get surgeries just like his sisters.  He did a GREAT job in the race.  He ran almost the entire way!  He was thrilled that hubby's parents and brother were there to cheer him on.
• Tonight, we were watching a movie and he started screaming in pain saying that his ear hurt. He had just been at the pediatrician's office yesterday and his ears were "perfect".  Hubby took him straight to Urgent Care and sure enough, ear infections on both sides.  Crazy that it can come on so quickly.  The doctor he saw said that his tonsils were enlarged and she recommended heading to the ENT after his history.

A couple of pics for you ..........

Luke after his race!

Silly girls!

This girl LOVES to swing!!!!

Showing off her new haircut