Monday, March 7, 2011

And the Little Brother Is Not To Be Left Out....

In a development, Jonathan and I could have really done without, Ryan went into the hospital to try to determine the reason for his low weight gain along with his anorexia/not eating.  What the doctors found is that Ryan needs thickened bottles.  Like his sister before him, liquid consistency was going into his lungs.  Both his pediatrician and I suspected this; however, it can take a long time to get the testing so a hospitalization was warranted to speed things along, if you will.
All other tests of his anatomy, etc came out fine.  He has since gained another pound to bring his weight to a little over 10.5  pounds at age 3 months, 1 week.  We are delighted to finally have some answers!!!  He is sooo much happier and content. It is sometimes hard to believe it is the same child we had at a month who screamed nearly all the time. 
This is thought to come along with his reflux so he is receiving medication for that as well.  This seems to offer him some relief as well.  We are thickening his bottles with rice cereal for now as he needs the extra calories to help with weight gain.  He also takes higher calories formula so we can maximize his calories with each amount he takes in.  He is still not a huge eater and we have to track how much he eats each day to ensure he receives enough liquid, but things are much brighter at the Durham house these days.
He does not seem to have any of the same conditions as his sister.  His needing thickened bottles is relatively common (we know a couple of families ourselves who had to do this) and is often the result of severe reflux.  He will undergo another swallow study around one year of age to see how he has progressed.  Most children outgrow this by a year.  We will see what happens at that time....until then we just keep thickening.........

Not So Fast.....

And here is the bit of news that slows our enthusiasm a bit.  Claire has begun to choke on solid foods, and it appears her congestion is back.  We have an appointment with the ENT later this month.  It will be interesting to find out if the muscle has contracted again as he suspects.  She will most likely need an endoscopy to determine this.  Yet another time of anesthesia.......
This has not gotten Claire's spirit down so we try not to let it worry us.  As most as us, "well what does this mean", here goes the short explaination:
If the muscle is not contracted, ie her acalasia has not returned then it is just a swallowing issue.  Most likely that her muscles are still trying to learn about the swallowing and/or she has a cold that effected it.  It could be that the thinner liquids are effecting her, and we will go back to full honey thickness.  At this time, the ENT feels this is unlikely but possible.
What he feels is more likely (but would be HIGHLY unusual, but when is Claire not) is that the muscle contracted again and is "blocking" the swallowing pathway.  If this is the case, we are not sure if he will try to dilate it again or if it will be time to discuss surgery to permanently dilate it.  We will just have to wait and see...I hate waiting.....and wondering.....we will keep you posted!

Thinner Liquids???

Since I have not updated the blog in forever many of you may not be aware of the newest developments in Claire's medical situation.  Back in November Claire had the latest of her endoscopies.  This is what resulted in the diagnosis, etc. as stated on the blog.  Then Claire's baby brother was born a week earlier than planned and blog enteries went to a stand still.  I apologize for that.  Here is what has happened over the last few months.
In December, Claire went to see the ENT Dr. Richter and had a swallow study.  The swallow study did show some aspiration (fluid into her lungs) at a nectar consistency.  However, Dr. Richter did not feel this was a huge issue at this time.  He feels much of this is because Claire's muscles do not have "practice" or the "know how" to swallow correctly.  So he has written a protocol which he uses with "swallowing kids" like Claire to teach their muscles how to swallow and return them to drinking a liquid consistency.  So, Claire has been drinking a bit thinner liquid, "thin honey" if you will.  We will thicken with the honey consistency thickener so she is by no means drinking a thin liquid, but it is thinner that what she has ever had in the past (since the tube placement).  She has tolerated this well with no issues.  That is thrilling for us!!  If she continues with no complications the hope is to have her on normal liquid consistency in the next year to year and a half.  We shall see how that goes.....we remain very hopeful!!
She was also taken off all feedings through her G-tube/button.  We only use it for medications or if she is sick and cannot take in enough fluid.  Some of her numerous medications were discontinued, which is always a wonderful thing!!

Claire also saw the allergist at the beginning of February.  After testing for 33 different allergies, it was determined she was not allergic to any of them.  Overall, the allergist does not feel she is allergic to foods although he cannot rule it out completly.  He did not know the cause of her very red cheeks but felt we could work it up further with a dermatologist if we desired.  Per the pediatrician and our wishes we are not pursuing that as we feel Claire as spent far too much time in doctors offices for medical issues.  Red cheeks are not a huge issues and not something life threatening.  We will see what happens with time.

We also saw the GI doctor in February.  Nothing much to report from there as Claire is so stable he does not feel he needs to see her for at least 8 months.  Mostly we are on a holding pattern as we wait to see what happens with her swallowing condition and her acalasia. 

All in all, life is going well for Claire!!  We can see a bit of light at the end of the tunnel.  Claire is a happy littel girl who can light up a room.  She doesn't let her tube stop her at all.  In fact, she helps us by opening it when she gets medicine and even can give herself the medicine by pushing in the syringe.  She definitely is starting to realize she cannot drink what others can, and this is very frustrating to her.  It is hard, but we push through it and try to distract her.  We all look forward to the day when she can go to Chick-fil-A and order a happy meal and drink the provided juice/milk.  Until that day, we wait and hope......

Speech and Occupational Therapy Update

A day of updates!! Finally have a few minutes to type. :)

Claire continues with two sessions of speech and feeding therapy a week.  She changed therapists in January to a lady who recently graduated from school.  My do I feel old!!!  Claire has taken to her and seemsspee to enjoy their time together.  As speech therapists get very little feeding therapy training in school, Jill is learning alot on the job.  Claire is doing better, but still struggles with using her tongue during eating as well as chewing completely and taking the small bites.  Claire loves to eat so it can be difficult to get her to slow down and practice her skills.
Claire's speech is progressing as well.  She has met the original goals of therapy set for her when she was evaluated in August.  This does not mean she is ready to "stop" speech therapy, rather that she has progressed and is now ready for some new goals.  As Claire's speech was so delayed we have a long road before we reach age appropriate abilities.  Some sounds may also prove to be harder for her secondary to the low muscle tone as described in the physical therapy update below.  It can be very difficult to determine what Claire is saying although other times it is crystal clear.  She loves to sing and can often be heard singing to herself as she plays.  It is so nice to hear her speaking that it is almost okay that it increases the noise level in the house. 

Claire has done very well in occupational therapy.  She LOVES her therapist and wishes she saw her everyday.  She just has OT once a week much to her dismay-I think it may be her favorite.  She is making great strides, and the therapist is amazed with how far she has come in the short time as well as how brave she is getting.  When Claire started she would not even get near the ball "pit"; now she jumps right in.  She was recently evaluated on her fine motor skills, and it was found that she did need assistance with those.  So the occupational therapist is now working on those tasks with her.  That will be an interesting area to watch.  Claire loves to do things with her hands, etc but she struggles with many things requiring muscles to move together like: dressing, scissors/cutting, writing/coloring.  And potty training is one adventure after another.  I think we will wait until summer to maybe, finally figure it out and become 100% potty trained.

Physical Therapy Update

Well, it has been far to long since I updated the blog.  I plan to do better.  So here goes!

Claire currently receives various therapies five times a week.  She seems to enjoy them and doesn't really know that is different than the norm.  As someone said to me at church yesterday: she is so laid back.  And that is really true.  While we do have our occasional two year old tantrum, for the most part she is very easy going.  I am thankful to have one more laid back.....

Claire has physical therapy twice a week.  Unfortunately, she will change physical therapists today as her previous one has moved on to another job.  There is just not alot of money in pediatric therapy, I have learned.  She has progressed well with her sessions and has progressed to the point where she can do many age appropriate activities.  Despite this, it appears she will need physical therapy for the foreseeable future.  With the loss of a therapist, there is a list made of who needs to continue therapy and who can wait until another is hired.  Claire was at the top of the list, which is good on one hand as she will continue therapy; however the flip side is that despite her gains there is much work left to be done. 
We have learned that she needs shoe inserts as her left foot turns inward.  We are hopeful this will help her gaite.  We are still looking into this as she may need bigger shoes, etc.  I will keep you updated as this progresses.  I am interested to see if she likes them....
We have also learned Claire has low muscle tone throughout her body.  This effects her physical abilities and helps explain some of her speech/feeding issues.  Here is the way the low muscle tone was explained to us: Picture a muscle as five hoses tied together.  In normal muscle tone the water is running through the hoses at full strength; think of how heavy and stiff those hoses would be.  Claire still has the five hoses, but the water is only trickling through hers resulting in the "low muscle tone".
When you put her in a room of her "peers" you can tell she is slower and is working very hard to try to keep up.  She doesn't let it stop her though.  I will be honest that it can be hard to watch, but I just remember what a fun little girl she is and how much fun she is having and don't let it get me down.  We don't know if this will ever be cured; however, it should not effect her daily life to a large degree.  Many people move slowly and deliberately so although she will most likely not be a star athlete, she will still get into as much trouble as the next gal.
Soon we will be off to another fun therapy session full of workouts on the stairs and exercise ball.