Adapted Tricycle

During Callie's PT session at home yesterday and we were talking about how she keeps her legs stiff in extension.  She is cruising nicely around furniture, but looks a bit like Frankenstein and does not bend well at the knees.  We were trying to think of ways to break up her extension pattern and her therapist asked if I had a tricycle that might fit her.  I remembered we bought a tiny one for Owen when he was little.  I ran down to our storage room and found it.  We put her on it, but of course she could not keep her feet on the pedals.  I joked about taping her feet to them and then thought of a great idea.  I taped her Crocs to the pedals!  We were then able to slip her feet in and out of the Crocs!  She seemed to enjoy being pushed around the house and this is a great exercise to get her to bend her legs as the pedals go around.  Isn't she looking grown up?! 

Happy Halloween!

Busy Week

Where have the last few weeks gone??  Time is slipping by quickly.  In fact, I am not sure where the last year went.  It seems like just yesterday, but a year ago this week Callie and I were in Seattle seeing Dr. Dobyns!  I would love to take her back to see him again.  Maybe sometime in another year or so when she has another MRI.  I look forward to showing him how well she is doing.  Wouldn't it be amazing if she was walking and talking?  I can't help but to hope...

The last week has been a little rough for Callie.  She developed granulation tissue at her G tube site.  This means a little extra tissue has grown around the tube which can only be removed by burning it off with silver nitrate.  I took her to the GI's office in Fairfax on Monday to have it done and then was given instructions and silver nitrate sticks to continue treating her at home until the tissue is gone.  Hopefully we can get it cleared up and the issue will not re-occur (although apparently it often does).  Then on Tuesday we had a follow up appointment with Dr. Silva, her ENT.  She has had fluid in her ears which we think could be impacting her hearing, and therefore possibly her speech (still limited sounds and no words).  Unfortunately the fluid is still there.  The ENT is giving it 6 more weeks to clear up.  If it is still there in December at our next appointment he will recommend getting tubes.  :-(  Then on Wednesday I had a discussion with one of Callie's night nurses.  Callie has had a few episodes at night over the last month or so where she wakes up and has a hard time catching her breath.  She is terribly upset during these episodes and takes a little while to settle down and go back to sleep.  It has happened four times now.  The nurses got together and discussed the incidents and suspect she might have sleep apnea.  They recommend that I have her evaluated in a sleep study.  So I put a call into her pediatrician to figure out what to do.  The poor little girl can not catch a break.  

With the doctor appointments plus her therapies, she has NINE appointments this week.  We are both ready for the weekend!!

Crawling!!!

It is with great joy and excitement that I can finally share the news that Callie is officially crawling!!  She has been army crawling since May, but has always had trouble getting up on her hands and knees.  This is an incredible accomplishment for Callie because less than a year ago she was so stiff that we could not even bend her into the crawling position!  Now she can transition from sitting, to side sitting, to all fours, and then make it a small distance.  She still often goes back down into army crawling, but she is improving each week and I know before long she is going to be quickly getting around everywhere and into everything.  We are amazed at how the Lord is blessing Callie and our family.  I cannot thank you enough for keeping our little girl in your prayers!  

Working on walking!

Callie worked hard at PT today!

Feeding Tube Awareness

One of my special mom friends recently shared a link to a site about feeding tube awareness.  I have been exploring this site and am finding it very helpful.  There is also an associated Facebook group and I have enjoyed connecting with some other tubie moms.  I even found some who have EoE kiddos and am looking forward to getting to know them and learning more about what Callie's future with EoE might be like so that I can better prepare.  

Anyway, on the Feeding Tube Awareness website they have a page designed with information for family and friends.  I found that I could really relate to some of their points and thought it would be helpful to share the page so that others might be able to have a better understanding of what it is like for many parents of tubie kids.  

http://www.feedingtubeawareness.com/Family.html

Crystal Ball

This week we had a follow up appointment with Dr. Im, Callie’s physiatrist or doctor of physical medicine.  At our last appointment we discussed ordering ankle & foot orthosis/braces (AFOs) to help her learn to walk correctly.  He said we would probably order them once she is pulling to a stand.  My main question for this appointment was what type we should order since she is now at this point.  I was surprised when he said he would like to hold off for now.  Instead, he would like to wait to get them once she is walking independently.  I could not help but to get excited about his matter-of-fact way of talking about her walking… it just makes me a little giddy to hear a doctor say ‘when’ she walks, and not ‘if’ she walks like they said at the beginning of this journey.  So I said great, we will wait!  And then I could not resist asking him when he thinks this will happen… when will she walk??  He said if he had to guess he would say 3 to 4 months from now.  I know it is just a guess, but it makes me so, so happy to think about her walking in the upcoming months!  We went on to discuss how she may or may not walk typically… there is a wide range of gaits, but he feels she will be on the typical end of the spectrum.  There could be some awkwardness; only time will tell.  Then I got greedy and asked him about running… does he think she will ever be able to run?  He said, yes, she should be able to run, but she may be awkward and/or uncoordinated.  He said it could be running for play or maybe something like kickball, but most likely not on an athletic team.  I am okay with this.  And of course these are all just guesses… he unfortunately does not have a crystal ball.  But just the thought of her walking around the house and possibly seeing her chase Owen around the backyard is enough to make me giddy with excitement!

G Tube Update

It is hard to believe Callie's procedure was almost two weeks ago already.  Things have been going very well!  The G tube is definitely better than the NG tube!  It is so nice to no longer struggle to keep the tape on her little face.  And I like how the tube is now out of sight.  Sometimes I forget about it.  We keep the PEG nice and secure under the velcro strips of her diaper so that it does not pull at the site and Callie leaves it alone.  She does not even seem to notice it.  She had a little discomfort the first day or so home, but quickly went without any pain medication and has been healing nicely.  I was concerned about her army crawling and that apparently bothers her because she does not do it anymore, but she kind of scoots on her side.  The good news is she is now getting up on her hands and knees in the crawling position!  She is not going anywhere yet, but she rocks and I am hoping it is only a matter of time before she figures it out.  

Callie has nine, yes nine, appointments this week.  I am pretty sure this is a new record.  At the first one yesterday we met with her EoE team (GI, allergist, dietitian, etc.).  They officially told us her last scope looked clear and the biopsies taken from her esophagus were normal.  So this means apples and bananas are officially safe foods.  We were given the green light to try sweet potatoes for the next 4 weeks and then we will move on to try carrots.  We are also going to cut one Elecare formula feed from her daytime routine and add the volume to her nightime feed instead.  This plan will allow her to keep her 900 calories/day Elecare diet while hopefully increasing her appetite during the daytime so that she will want to eat more solids.  Callie will be scoped again in 3 months and at that time the PEG will be swapped out for a button G tube.  I am looking forward to that change.  

Another appointment to mention was this morning's meeting with a pediatric ENT.  It was our first time seeing Dr. Silva and I really liked him.  To back up for a minute, Callie has a significant speech delay.  She has a variety of sounds, but really only the "B" consonant sound is clear and she does not have any words yet.  On the day she was diagnosed with PMG we were told she may never speak, so we are just waiting to see what happens.  In the meantime she goes to speech therapy and is learning how to communicate non-verbally (signs and in the future, possibly through technology like an iPad).  Her speech therapist recommended that we have her hearing checked just to make sure she does not have an issue in that area that may be contributing to her delay.  About a month ago she had a hearing test and we were alarmed when she did not pass with flying colors.  They advised the borderline results could be due to fluid in her ears.  She has had two ear infections this year and the fluid could be left over.  So this is how we ended up at an ENT today.  Dr. Silva confirmed she does indeed have some fluid in both ears which could explain the hearing test results.  He advised he would like to give it a little longer to resolve on its own before taking any steps (like tubes).  In the meantime he recommended having a different type of hearing test conducted in his office.  We went ahead and did that today and she passed in both ears!  This was great news and supposedly we can now feel fairly certain she has no hearing issues.  We will go back in six weeks to check the status of the fluid.

Four appointments down so far this week and only five to go!

Going Home!

Yesterday went pretty smoothly, for a while.  Callie showed a little discomfort, but did well for the most part at 10:00 during her first formula feed through the new tube.  That was encouraging.  Then she did great at 2:00 during her second feed.  At that point I happily started packing.  A nurse came in to complete my G tube care training and a case worker stopped by to make sure I felt comfortable with everything.  Dr. Enav (GI) gave his blessing to release Callie and they started preparing her paperwork.  Then we sat in the room and waited.  

The nurse stopped by to apologize for the delay... apparently a few people were admitted and it was taking a while to process Callie's release.  Another hour passed and I noticed Callie starting to act clingy.  And then her cheeks looked flushed and she seemed warm.  I walked out to the nurse's station and asked them to take a look at her.  Sure enough, she had a fever!  She was up to 100.9.  I could not believe it.  So they called Dr. Enav and were trying to figure out what to do.  They monitored her for a little while and she went up to 101.3.  Finally they advised we needed to stay.  They gave her Tylenol, took a chest x-ray and then a blood draw.  By this time it was late last night and Callie was exhausted.  She fell asleep and thankfully slept through the night.  The hospital was actually quiet and they left her alone except for her 1:30 feed, so I was even able to get some decent sleep.

This morning Callie woke up fever free and in pretty good spirits.  The resident advised her chest x-ray looked good but her blood work came back elevated.  It could indicate an infection or it could be elevated from the stress of the procedure.  They were not really sure what to do about a random fever with no other clear symptoms.  Dr. Enav stopped by and said the site looked good.  It was oozing a little, but he said this is normal.  I am just supposed to keep it clean and dry, and make an appointment to have her checked by her pediatrician this weekend.  They decided to monitor her until the afternoon and said if the fever did not come back, if she continued to tolerate her feeds, and if there were no other symptoms, we could go home.  Thankfully everything is falling into place and we are just about on our way out! Hopefully I do not jinx us by posting this while we are waiting for our paperwork again, but I feel pretty sure we are going to make it out the door this time.

We did have a nice surprise yesterday.  I recently told you about Callie's wonderful night nurses.  Well, they stopped by to visit her!  They spoiled her with balloons and a teddy bear and gave her lots of attention.  She was very happy to see them and the visit definitely brightened our day.

Now we are happy to go home and get settled.  Thanks for thinking about us and following Callie's progress.  xx

G Tube

Well, our little girl now has a G tube.  We checked into the hospital yesterday morning.  She was sedated while I held her in my arms.  It never gets easier... I teared up as she slipped away and then cried in the waiting room.  They performed an endoscopy to check the health of her esophagus and then placed a PEG tube.  The endoscopy results came back normal which was great news.  That means her EoE did not flare up as a result of her eating pureed apples and bananas over the last 8 weeks.  So we have two safe foods so far.  We have an appointment with the EoE team on September 12th and will be told how to proceed with her diet at that time.  

Callie was very uncomfortable from the PEG when she woke up in the recovery room.  She was crying inconsolably for over 30 minutes before they gave her morphine.  She then rested more comfortably in my arms, but was out of it for a while.  She did not want to be let go the entire afternoon and evening.  Luckily she was so exhausted by night that I was able to get her to lay in her crib.  Despite the child that screamed for hours in the room next to ours, frequent beeping of her IV, med, and feeding pumps, lots of nurse traffic, and a tube leak in the middle of the night, she slept pretty soundly.  I did not, but was not expecting differently.

Her first formula feeds through the PEG will be at 10:00 and then 2:00 today.  If Callie tolerates both of those feeds we may be released later this afternoon!  I am trying not go get my hopes up, but that would be so great.  Otherwise we will be here until tomorrow.  

Oh, I should also mention that Callie had a visitor yesterday shortly after we settled into our room.  Miss Virginia stopped by.  Callie was somewhat out of it at the time, but stared at her sparkly crown.  Afterward a Google search revealed this was not THE Miss Virginia 2011, but apparently still some sort of Miss Virginia.  It was still nice to have a visitor with a sparkly crown.  :-)