On a Mission

I have been on a mission for months to find a cup Callie can use independently.  She loves to drink water, but can not form her lips around a sippy cup or straw.  This is odd because she used to drink a bottle, but apparently this ability has been lost.  We have the best luck with trainer cups that have a rim instead of spout, but she can't seal her lips to the cup and sip/suck so I have to remove the valve.  When I do this, the water flows freely and we end up with a mess unless she is closely monitored.  There is usually one hole on the rim for the liquid, but she does not grasp this concept so inevitably the cup gets turned so that the hole is not by her mouth and when she tips it back the water runs down her cheek, neck, back, etc.  I recently discovered the Reflo cup that is nice because the water flows out no matter how you pick it up, but it also flows pretty freely and we still end up with a mess.  The same goes for the OXO Tot Training cup I purchased most recently (the water flows WAY too freely!).  So far I have bought 14 cups.  Eventually we will find one that works!!

My future's so bright...

... I gotta wear shades!

WALKING!!!

Our baby girl is starting to walk!!!

Milestone met on time... Guess which one?

Terrible 2's tantrums!  Really, Callie?!  This had to be the milestone you met on time??

Apparently Callie is globally delayed except for typical 2 year old tantrums.  I just have to laugh.  In the past week she has thrown a few pretty big ones.  It begins by telling her "no" to something or making her do something she decides she does not want to do, like be set down instead of carried around.  She starts crying and carrying on, as in sprawled out on the floor kicking her legs.  It is quite a sight!  This is a first for me since our angel first born son has never thrown an all out tantrum.  On Monday it happened in the middle of her PT session at the hospital.  For the first time I was one of those parents who could not talk any sense into their child while in public.  While I am not thrilled by this newest development there is a part of me that is okay with it.  I think this is a good sign of her social and cognitive development.  She is clearly forming her own opinion about things and wants a say in what she is doing.  This expression of her growing independence is truly a good sign!  So I will figure out how to deal with the very typical two year old tantrums...  As unpleasant as they are, I am glad to be dealing with an age appropriate issue.  :-)

Overdue Surgery Update

It it hard to believe a week ago right now we were in the hospital for Callie's surgery.  Things have been very busy over the last couple of weeks and the time as quickly slipped away.  Leading up to the surgery were some extremely hectic days.  The week prior Callie had 8 appointments and the two days prior she had 6 more!  

Things started going downhill the weekend before her surgery.  That Friday night she screamed in pain when her midnight feed started and she was inconsolable.  Then she proceeded to wake up periodically through the night crying.  Her g-tube button site seemed to really be bothering her.  Her nurse and I tried to make her as comfortable as possible, but she pretty much dealt with this all weekend.  The site seemed tender, but there was no redness or fever or any sign of infection.  I took her to the pediatrician on Monday, but they also were not sure of the issue.  I was able to go back to Fairfax on Tuesday morning to see a GI nurse at the tube clinic.  They were also stumped with no infection signs, but gave me a prescription for a steroid cream to put on her granulation tissue and instructed me to get a specific type of barrier cream to put on her tummy around the site to protect the good skin around the tissue.  I started using the creams that night and the site was 100% better within 24 hours!  So that issue was solved, but then another developed.  Tuesday night/Wednesday morning at 3AM in the middle of her feed she sat up and projectile vomited.  It happened again during her first feed of the day.  I called the pediatrician and they said to switch her to Pedialyte.  She tolerated a Pedialyte feed and a 50/50 Pedialyte/Elecare mix that afternoon, but then vomited again that night.  I really did not know if we were going to be able to go through with the procedure the next morning.  We ended up going to the hospital as planned and during the interview with her anesthesia team it was decided that the surgery would be performed as scheduled.

Callie had ear tubes put in and her tonsils & adenoids removed.  The surgery itself went smoothly and Dr. Silva said she was 90% (!) blocked by her adenoids and her tonsils were huge.  So she should find some relief after healing.  It was difficult for her to wake up from the anesthesia, but she eventually became more alert.  She was not a happy camper for the rest of the day.  I think that was the first day for as long as I can remember that she did not smile the entire day.  :-(  Callie was admitted to the hospital for observation for 23 hours following the surgery and we were released by about noon the following day.  She was a little more herself the second day and then continued to improve until she was able to go without any pain medication a few days later.  We will go back to see Dr. Silva in about 5 weeks for a checkup and hearing test.  I am anxious for the results.

Currently we are experiencing another issue.  Callie started vomiting again this past Sunday night.  We had to give her Pedialyte only again for 3 days until she was finally able to handle a 50/50 mix with Elecare last night, although at a very slow pump rate.  We are not sure what is causing these vomiting incidents and hoping it is just a bug that will soon pass.  Today she handled a mix of Elecare & Pedialyte at a slow rate.  I am working on slowly introducing more and more formula, and then once she can handle 100% Elecare again I will work on increasing the pump speed.  It will probably take us a week to get back to our normal feeding schedule, but we will get there.

We are currently praying for no more issues!  Fortunately they have not been major, but I feel like there has been one thing after another lately.  In addition to Callie's issues, Owen came down with an impetigo rash and then I got strep last week.  We could use a break.  But again, these issues are thankfully minor and I am optimistic we will all be healthy again soon!  

Here are a few pictures from the hospital.  Lately she enjoys watching Baby Einstein and Baby Signing Time on her iPad and this helped keep her entertained while recovering:  

This picture is from the day of her surgery when she would not crack a smile.  Wow, she looks really grown up in this one, don't you think?

This one was taken right before we were released.  They put a big Vecta sensory bubble tower in our room to try to cheer her up and she finally started enjoying it right before we left.

More Speech/Feeding Therapy!

As I mentioned before, speech/feeding therapy is my new focus for Callie in this new year.  After a bit of negotiating, I am happy to report our county has now agreed to provide Callie with one hour of speech therapy per week.  So she will now have a weekly session with a county therapist in our home as well as continue to attend her weekly private session at the hospital's therapy center. The new county therapist stopped by twice in the last week and made a good first impression. She seems very experienced and I liked her soft manner with Callie.  She also has a strong feeding background, so she will work on both types of therapies during our sessions.  I am optimistic that these additional sessions will really benefit Callie!  

Here are pics of our little girl having fun during her hospital speech therapy session today.  :-)

Sleep Study Results

Today I met with the doctor at our sleep center to review Callie's results.  Our little girl has sleep apnea.  :-(  The report I received describes how comprehensive the test was:  "A Sensormedics SomnoStar polysomnograph recorded EEG, eye movement, chin EMG, airflow, microphone, chest and diaphragmatic excursion, EKG, leg EMG, body position, and capillary oxygen saturation. Lo-lux CCTV input was recorded digitally for later review."  Wow!  So I guess they can accurately make a diagnosis.  

The overall respiratory disturbance index (RDI) was 12.3 per hour.  Her overall AHI (apnea-hypopnea index) was 9.0 per hour; 27 apneas, 34 hypopneas, 22 RERAs were present.  The longest duration of the respiratory event was 23 seconds (!) and the average duration was 10 seconds.    At one point her oxygen saturation dropped to 86%.  The microphone recorded frequent moderately loud snoring.  Her official diagnosis is "Obstructive sleep apnea syndrome with mild oxygen desaturations".  

At least this confirms we are making the right decision to remove her tonsils and adenoids.  Callie's surgery is scheduled for February 2nd.  Her ENT will also place ear tubes at that time.  Hopefully we will see some positive changes in her health and sleep, and maybe even with her speech and feeding in the upcoming months.  

Sleep Study

Last night Callie went to a local sleep center for a sleep study.  We checked in at 8:15 PM and about 45 minutes later they wired her up.  It was similar to our experience with EEGs, but less probes on her head and more on her little face.  Unfortunately it turned out to be a bad night for our appointment because just hours before going in she vomited and came down with a 102 degree fever.  I talked to the doctor and we decided to go through with the test.  Callie was restless until 1:30 AM, but then gave in and slept soundly until about 5:45 AM when they stopped the test, unhooked her, and sent us home.  She was back in her own crib sleeping soundly by 6:30 AM.  A special thank you to Callie's wonderful nurse Yolander who came with us and stayed with Callie while I slipped home and took a nap (since we live minutes from the sleep center)!


I am praying the test was successful and not something we have to repeat.  The results will be available this Friday.

Another ENT Update

Two and a half weeks ago I wrote about how Callie had ongoing congestion, went through two rounds of antibiotics, and still had an infection in her right ear.  After the fever I mentioned, we ended up filling the third antibiotic prescribed by her pediatrician and finally the runny nose and cold symptoms cleared.  Today we went to Dr. Silva's (ENT) for a follow up appointment.  He advised her ears are still filled with fluid and her right ear is still infected!  He went ahead and prescribed antibiotic #4, Augmentin.  Crazy!  Since she has now had fluid in her ears for 6 months and multiple ear infections, we agreed it is time to move forward and get her ear tubes.  In addition he performed a nasal endoscopy and discovered her tonsils and adenoids are very large.  This unfortunately means he also recommended that they be removed.  Hopefully it will not take too long to get the surgery scheduled.  At least the tubes, tonsillectomy, and adenoidectomy can all be performed at once although I really hate that she has to go through all of this.  Now that we have decided what to do, I am anxious to get it over with.  And I am holding out a little hope that these changes might possibly help her speech and/or feeding.  We will see.  

In the meantime Callie's sleep study is scheduled next week.  We will hopefully find out whether or not she has apnea.  If so, it will help confirm removing her tonsils is the right decision.

Here is a picture of our little girl tonight.  She loves her doodle boards and you can see how well she holds the pen.  Her hair is getting long and she is starting to look so grown up.  Love her!!  :-)

Happy New Year!

Wow, what a year!  I am so relieved this one was better than the last.  2010 started as the best year ever after Callie's birth and ended as the worst year ever after her diagnosis.  2011 was much more positive and better all around.  We definitely had our ups & downs and tears of both joy & sorrow, but overall it was full of blessings.  It is hard to believe one year ago our little Callie at 13 months of age was about 15 1/2 pounds and not able to sit independently.  Today at just over 2 years old she is about 24 pounds and working very hard to walk!  She just learned to take steps with her new baby doll stroller and with any luck will soon be making her way around on her own!  And she did not have any seizures this whole year!  PRAISE GOD!!

I have been somewhat obsessed with getting her walking over the last several months and have been focusing primarily on her PT.  This year my focus will be on her speech and feeding.  These are now the areas where she is lagging the most.  And I should point out that this is exactly what Dr. Dobyns predicted when we went to Seattle last year!  Callie is trying to say a few words like "up", "ball", and "baby", but they are very approximate at this time and her speech sounds are still pretty much limited to "ba" (no "da", "la", "ma", etc. except for something that sounds like "a-up-a" for "up").  When it comes to eating, she will accept food into her mouth like taking a bite of banana, but once it is in there she does not know what to do with it.  She has not figured out chewing yet.  So we are sticking mostly to purees and she for the most part could care less about eating.  If we just tube fed her all day, she would be happy.  Please pray we can make great progress in these areas this coming year.

I have been writing about caring for Callie for nearly a year now and it has been therapeutic for me to share this journey.  I am typically a private person and it took me a while to feel comfortable sharing, but I am so glad I did.  I cannot thank you enough for following Callie's progress and for your support & prayers.  Each comment left and email received has meant so much to me.  I love how it has connected me with other PMG moms from across the country and around the world!  It has been a real blessing.  Thank you all so much.

Callie & I wish you the very best in this new year!  xoxo