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I am the lucky mom that has an address and a mailbox to welcome the bills.  I am one of the lucky moms that can pick up my cell phone, or log into a computer, to research doctors and make appointments.  I am one of the lucky moms who has a car and can make it to those appointments.  I am one of the lucky moms that rolls my eyes every time the financial clearance office calls, even though nothing has changed.  I am one of the lucky moms that is able to fight insurance companies to get things covered, or at least straightened out.  I am one of the lucky moms that gets to comfort my daughter through surgery after surgery and therapy after therapy.  I am one of the lucky moms…for those reasons and so many more.

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As I have said before, I do not consider a cleft an “easy special need”.  It is not one and done.  It is not fun at times.  It is not easy many more.  I do cry and I do get my heart broken repeatedly, but I am lucky.

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I am not one of the moms who feels the need to create an adoption plan because her child was born with a cleft.  I am not one of the moms that needs to walk for hours…or even days because of the remote chance her child will get picked. I am not one of the moms who cries myself to sleep, wondering if her child will be able to attend school looking like this. I am not one of the moms whose child has been labeled “cursed” because her face didn’t grow together as it should have.  I am not one of the moms who has to cover her daughters face in public.  I am not one of the moms who has to worry about malnutrition.  I am not one of the moms that feels hopeless and helpless.

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I am just a mom trying to provide these comforts to other moms.

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If you would like to join this mission.  To help bring hope to the hopeless and smiles that last a lifetime, please consider donating to this cause.  To view our personal fundraising page, please click HERE.

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Thank you.

ST Celebrate

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The big ONE!

The girls started first grade a few weeks ago.  First grade.  That’s like the big leagues.  Basically it’s completely unfair how quickly they are growing up and now we’re staring at the big number SEVEN in the eyes.

Anyway, they were TERRIFIED about moving to a new grade (they had been in their previous classroom for three years b/c they are mixed grades)!  People would excitedly ask them if they were excited for first grade and a few times, it nearly brought tears to their eyes.  Ella does not handle new situations/change easily so her fear started before K5 even ended…and then I think it just rubbed off on Vi so she quickly become just as anxious.  Ed and I successfully dropped them each off in their classrooms and managed to leave before any tears (by anyone) started…huge accomplishment! When I picked them up at the end of the day they came bolting at me screaming, “I LOVE FIRST GRADE!” so yeah…despite being a little more tired, they are doing great.

I’ve had a chance to have a meeting with Violet’s teacher and speech path already.  I felt that given where she is with her cleft journey, and a few other things going on with her, putting it all out on the table right now would be best.  I want them to know we’re all ears if they have concerns or feel the need to make modifications to her IEP etc.  They were wonderful and I am very confident she’s in really good hands.  I am looking forward to getting to know Ella’s teacher at parent/teacher conferences in a few weeks, but Ella seems to love her, so I’m happy with that for now :)

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A few highlights from our days of summer.

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Camping along the Mississippi. camping-3076web

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I had the opportunity to do a shoot up in Door Co. and take the family along. Swimming at sunset was definitely their favorite.

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Catching up.

I know a lot of you now keep up with these pages on FB, but I’m just going to re-post them here…to make up for the past 6+ months I’ve neglected this.

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11 Easterweb

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16 Adoption Day

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20 summer web

My sadly neglected blog.  I am now feeling the need to revisit (I’ll update the photos and more soon!)  But for now…

A few months ago, I was having a conversation with a friend about special needs adoptions. What’s considered a special need and what’s not?  What makes one case more significant than another?  A conversation similar to those I’ve had time and time again.  Friends, acquaintances, near strangers…you name it, it comes up often. When the fact that the girls were adopted through “special needs” adoptions because of their clefts, people are very quick to say “but it’s hardly a special need at all” or “oh, but the doctors are so good, it will be nothing” etc. etc.   These comments are said to be kind and innocent.  To comfort us in a way.  I have never once thought any other way and truth be told, in the beginning, I kind of thought that too.  Well, I mean, I knew there was definitely more to it than that – I took the craniofacial class in grad school so I knew it was a bigger topic with many other components, but now that I am a mom to a child born with a cleft lip and one born with a cleft lip and palate, I beg to differ on the perception that “it’s hardly a special need”.

Because Ella’s story has played out as we imagined it would (thus far but that too is TBD) – a surgery for a moderate cleft lip only, and we’re done for now, this post really pertains to my girl Violet.  Vi was born with a rather significant cleft lip and palate.  A cleft that extended from her nose/lip all the way through to her throat (through the soft palate).  Her lip was repaired when she was eleven months old, while she living in China.  Although her lip was closed there was no real roof to her mouth.  When she cried, I could see daylight coming into her mouth…through her nose.  When she ate, the food came out of her nose.  Her speech, nearly unintelligible to strangers and at times, pretty hard for even Ed and I to understand.  

She was adopted at 34 months – her cleft wasn’t repaired until she was 36 months old. Approximately 2 years later than children living here in the states (or those with better access to health care than what she received through her orphanage and foster family). Her first major surgery to close the palate was considered pretty successful.  She had a few spots on the roof that didn’t heal perfectly, so she developed small holes (fistulas) which lead to more {although very minor} leakage out of her nose but overall, it was okay.  She was pretty susceptible to getting sick at this time and her nose ran for over 9 months straight as the tissue inside regrew and continued to flush out it felt was foreign up there. 

Fast forward about 9 months and she underwent palate surgery number 2, to close the fistulas.  As the doctor was operating, he discovered a few more hidden holes that didn’t heal so although it wasn’t the major closure of the first surgery, it turned out to be longer and more extensive than that one (he also rebuilt a uvula-like structure in the back).  That was her third surgery – she was 4.

Later that year, she also started having difficulty with her ears.  Children with clefts are significantly more susceptible to middle ear problems.  Although Vi never presented with an infection, I could tell, over the course of a few weeks, that she wasn’t responding as quickly and seemed to not be hearing well and her speech was deteriorating pretty rapidly.  After a visit to the ENT, we discovered she had significant (uninfected) fluid in her ears.  They quickly scheduled her for tubes (surgery 4).  They worked wonders!

When she was 5, it was becoming clear that her speech wasn’t progressing as quickly as we had all hoped (despite receiving therapy 3x/week and living with a speech path mom) so we met with her cleft palate team and all agreed that a pharyngeal flap (p-flap) surgery would be necessary.  This, her fifth surgery, in simple terms, takes skin from the back of the throat and attaches it to the soft palate.  By “obstructing” the airway a little (which was too big for proper closure for speech sounds), it reduced the amount of hypernasality and increased her ability to build up pressure in her mouth to make certain sounds, which she previously couldn’t make, like “b”.  What we expected to be the “easiest” surgery turned out to be the worst, by far.  She was in terrible pain and the doctors made us stay several extra hours because she refused to eat or drink.  Thankfully it didn’t last long and she was back to herself within a few days.  This surgery has been very helpful and definitely made the biggest impact on her speech.  Everyone could understand her better within days of the procedure.

Age 6 – tubes fall out and ears heal back up…only to create fluid again and she was quickly scheduled for surgery 6 to reinsert the tubes.  Sadly, one has already fallen out (it only lasted about 7 months and the other is questionable at this point so she’ll likely need them replaced in fall…surgery 7).

Although Violet’s lip and palate have been repaired, she still has a cleft in her gum line and she is missing both the baby and permanent teeth (incisor next to the front tooth) in that area.  To repair this hole, her surgeon and orthodontist will work together to prep the space (expand the palate) for a bone graft.  They will take bone from either her hip or skull and use it to rebuild the bony structure between her lip and nose and give her gums that will support permanent teeth. At that time, the surgeon will also reconstruct her nostril, which has been collapsed since birth (with little to no airflow) due to lack of bone underneath.  This surgery (8th) will likely happen within the next 12-18 months.  All of this so far, is pretty much what we have anticipated on our journey.

Until today.

Today was our first full evaluation with the orthodontist.  After x-rays and her exam of Vi’s mouth, the orthodontist told me that Vi would need even more work than we had expected. We knew all along that she would need a healthy amount of orthodontia because she (and most children with clefts) has a significant amount of scar tissue on the roof of her mouth/lip so her upper jaw and palate aren’t able to grow appropriately.  She has a considerable underbite, which not only affects her speech and facial profile (something she’ll care about more someday down the road), but her ability to bite food with her front teeth.  Her lower jaw is growing appropriately which is essentially making the gap between the upper and lower jaws/teeth bigger and bigger.  The growth is deficient in three ways…length, width, and height.  In other words, her palate is too short (front to back), to narrow (side to side) and too high (doesn’t come down low enough to close enough).  Her orthodontist said that she is able to take care of the width no problem and some of the length (moving the jaw forward), but that she would need also need jaw surgery. Something we had never considered.  This will need to happen 6 months after the bone graft (assuming the graft takes and is a success).  (Surgery 9).

The extra blow came when she said that this will continue to happen while she’s growing into adulthood.  Her upper jaw will not be able to keep up with her lower jaw and they can’t let them get too out of sync with each other or they become too difficult to correct.  So she anticipates that she’ll need a second jaw surgery around the age of 13 (surgery 10-ish).

She also said that the jaw surgeries can have an adverse affect on their speech.  Vi has worked SO hard to make herself understandable for 4 years now…and by moving the jaw forward, it could further open up the already too large airway in the back, making her speech difficult to understand again.  We are hoping that because she’s had a p-flap, that skin will continue to grow and function as it is now.  This news broke my heart a little bit.

So for now, we’re monitoring her teeth so we know the perfect time for the bone graft and then we cross our fingers that they can work magic (in the least invasive way possible) on her jaws.

I don’t write this for sympathy – if anyone deserves some, it’s Violet.  I signed up for this, she didn’t.  It’s simply for education sake because I haven’t written much about life with a cleft for a while now.  I wouldn’t change anything in the world and I know she will continue to rock these upcoming challenges, but today I have a little heavy heart knowing what’s ahead of her.

My baby (thankfully) wasn’t born with a terminal illness and we’re lucky enough to only have to spend a day or two in the hospital per trip.  Violet has friends and can run and jump and play and for that, I’m so insanely grateful…but…I can no longer agree that this is “hardly a special need” or it’s “an easy one”.

Manageable and doable and a blessing to us?  Absolutely.

… but not “easy”.

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Well…a month plus in but here we are.  It’s been a rather slow start to the new year.  We’ve enjoyed a lot of “together time”.  Why?  Because it’s been so flipping cold we have no choice!  Schools were closed 4 days in January alone due to wind chills -40 or colder.   That many days off of school is a rather epic event in WI.  The girls have had outdoor recess 3 times since Christmas.  It kind of sucks, but we’re taking it in stride (best we can).

I will say, I have appreciated the absolute beauty of this winter though.  Seriously AMAZING sunrises and sunsets.   There are a few other outdoor treasures I want to capture before the chill officially leaves (at this rate, I may have until June) so once I get brave enough to be outside for any length of time, I’ll snap them :) winter-4858web

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A few other memories…

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Another belated catch up!

We had a lovely Christmas.  A bit quiet, but really nice.  The girls were engrossed in all things “Sofia” – although, had they seen Frozen prior to Christmas, that definitely would have won as Elsa and Ana have won their hearts :)  This year’s letters included things like “speedy fast running shoes”, sofia the first dolls and accessories,  nail polish, a diary…and socks and underwear.  Still not sure how that makes it onto their lists every.single.year!  

We baked cookies, mailed letters to santa, decorated a school christmas tree downtown and rounded out the events with tracking santa and eagerly going to bed … awaiting the magical arrival for at least one more year.  

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NYE

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