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Speech, To Take a Break or Not?

Speech, To Take a Break or Not?

Our son was born with a bilateral cleft lip and palate (BCLP) and has been in speech therapy since he
was 18 months of age.  I value private speech therapy and we are faithful in keeping our weekly appointments, incorporating speech techniques at home to gain consistency and working on a great deal of repetition.

speech therapy

It’s just that at this point we have now added orthodontic appointments to our ‘have to’ weekly list and he has a palatal expander and permanent bar on the bottom.  We’ve been told that his cleft will temporarily widen due to the palatal expander and that his speech intelligibility is going to degrade because of the widening cleft and cumbersome contraption in the roof of his mouth.  All of which we are currently witnessing.

This kid has weekly speech and reading therapy already and now we have added orthodontic appointments!  His therapist believes that there is value in continuing speech therapy and that other things can be worked on while suffering through the changes taking place due to Phase 1 of his orthodontic treatment.

My husband and I have been seriously discussing our options and are leaning towards giving speech therapy a break.  His speech is not going to improve while undergoing orthodontic treatment in preparation for his bone graft surgery, so why not give him a break?  It’s not forever and they are estimating that he is going to need the bone graft in 6-9 months.  Speech therapy can resume after healing from the bone graft.

thumbs up down

Has anyone else gone through this and found value in continuing speech therapy while undergoing orthodontic treatment?  Did you take a break and regret it?  Or was it a much needed break for your cleft kiddo that allowed them to just deal with the ortho stuff?  We have a lot to consider and once we make a final decision I will post an update.  Any input or feedback, even from a therapist’s point of view, is welcome!

 

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Dental Appt Update

Dental Appt Update

Our little guy had his 6 month dental check up with our favorite dentist, Dr. Frank Enriquez!  He got to put the purple tablet in his mouth that dauntingly showed where it is that he needs to be brushing better…shudder

As his mom, I know the purple tablet is “judging” me and letting everyone in the dental office know that we are not enforcing the flossing like we should be and we are not being as diligent about making him brush as long as he should.  Thus, I cringe a little when the purple tablet outs me.  I vow to be better about instituting more brushing time with that little timer they give me in his take home goody bag.  I know full well this may last for a few days after our visit and that inevitably we will get back into our routine, i.e. screaming around the house before bedtime and rushing through the brushing.  🙁  I am trying to be better – I promise.

The upside to this appointment was that he did not have any cavities so maybe our lack of attention to brushing/flossing is not such a bad thing? I mean, if he doesn’t have any cavities then maybe we are doing enough? Right…I know better but no cavities=good job in my book! 🙂

Our dentist really took his time explaining to us that we have about a year and half before we are going to need the alveolar bone graft.  Gavin has one upper tooth that is loose and his permanent front tooth is coming in above and in front of the loose tooth (which is not uncommon in cleft kiddos). The good point being that when this permanent tooth drops it will be out in front and he will no longer have the under bite he currently has (which is also common in cleft kiddos).  He has an extra tooth coming in through the gums above the baby teeth and  they are happy about this because in their words “where there are teeth there is bone.” For our cleft kids this is extremely important. Some cleft kiddos are not born with all of their permanent teeth and have to look forward to bridges or dental implants depending on their health insurance and family’s financial status.  Our little guy had a 360 degree x -ray taken of his upper and lower jaw revealing that he was born with all of his permanent teeth and a few extra. They have no explanation for this but continue to tell us this is better for him because after his bone graft, he will be able to begin orthodontic treatment and start working on moving teeth around or extracting teeth should that be necessary.

We also found out that with his permanent teeth dropping down in front and thus, eventually eliminating the under bite, that his speech will be markedly improved and we may even (cross our fingers) get to take a break from speech therapy and focus solely on reading therapy instead. It’s going to be awhile but the thought of not having to get him to private therapy each week and work with the school speech therapist AND attend IEP meetings is a bit of a dream for mom (ME!).

For now, we will continue to work on keeping the teeth he does have in tip top shape and continue to monitor his progress while working towards that inevitable bone graft surgery. 🙂

 

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Smile Milestone

Smile Milestone

As a mom it can sometimes be difficult to2nd grade watch your cleft kiddo realize that he is different. Entering the second grade his friends, classmates and teammates are all sporting toothless grins reminiscent of a jack o’lantern and yet, he is not. At this point he realizes that he is not going to meet this typical milestone. I can’t help but feel a pang in my own heart as I, too, will not get to be a witness sharing in the photos other moms are taking and posting on FB, Instagram, etc.

This is not the first milestone that we have missed having because being a mom to a cleft kiddo means that we have a different experience that is not your “typical” one. Being a cleft kiddo mom means that sometimes we don’t get to experience breastfeeding our little one in the middle of the night and though you might be reading this and thinking that’s not such a big deal because those nightly feedings can be a real pain, it’s still something that I did not get to choose to do. The choice was made for me and since I did breastfeed my first child I did in fact know what I was giving up, or rather, missing out on. Holding my baby in the middle of the night and rocking him to sleep while breastfeeding were visions I only dreamed of and not our reality. This was a grief only I had and only another mom who is not able to feed their crying child could understand.

We did not celebrate 3 month old photos with our cleft kiddo because we were busy preparing ourselves for his first surgery. Our milestone was that he had his lip repair surgery, ear tube surgery and made it through anesthesia.

Our son was not able to babble out  “dada” or “mama” as a typical child would and as parents that was a big one that we had to go without for awhile. Eventually the words came but not as soon as they would have had he been born without the bilateral cleft lip and palate. We used sign language to assist him with his frustrations with communication and he learned “mama” and “dada” that way first.  We have had to learn to shift our expectations for his “typical” milestones and celebrate in the moments we do get that we have achieved after a great deal of hard work and continued efforts.  Repetition is key where speech and language are concerned and getting to hear him speak as well as he does now has not been without its challenges.

Blowing bubbles was another childhood milestone that was not immediately met by our cleft kiddo. You or I do not even think twice about being able to blow bubbles. It was not until my son started crying out of frustration at not being able to do what other kids were doing around him that I understood just how difficult it really is to do something as simple as blowing bubbles. We worked with his speech therapist and at home to get him to that very important milestone and the elation we all felt when he first got it was a moment I’ll never forget. He doesn’t remember this, but I sure do.

As our little guy gets older and sees for himself the milestones he is not meeting like that of his peers we share a grief not known to others. Our norm and our milestones are different and that’s okay. He came home pretty excited to share that he has one upper sort of front tooth loose. He will not lose his two upper teeth like “normal” but just having that loose tooth is exciting for him and he can’t wait until it actually falls out so he, too, can share his tooth fairy story.

His smile will not be that of a jack o’lantern this year and that twinge of pain I get in my heart is not as strong as it used to be. It’s there sure, but we have learned that our milestones are different and we don’t yet know the exact differences yet because we are still going through it. Navigating through the unknown is something we as a family are doing together and it is exciting. Instead of being the mom that has gone through it all before and is comparing this kiddo’s experiences to his older sibling, I am looking forward to what I don’t know is coming and expecting the unexpected. This crazy life of ours is chaotic and colorful. His million dollar smile not only cost us that much, (:) )but makes us feel like a million bucks every time he flashes it. Embracing his unique smile and looking forward to that one lost upper tooth is our new normal. We will have our photos and our special moment. It won’t be like that of our friends and peers but it will be ours and it will be celebrated.

Celebrate your unique milestones with your cleft kiddo and embrace the little things that add up to the really big things that are yet to come. 🙂

Some helpful resources regarding dental care for the cleft kiddo are:

Dental Care for Cleft Kids

tooth-eruption-chart

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