Two weeks of news

This update is way overdue.  So much has been happening and I just have not had time to sit down and write.  :-(

Unscheduled Weight Check (4/19/11):
I stopped by the pediatrician’s office last Tuesday to pick up a prescription.  I could not help but to borrow their scale to check Callie’s weight… 18 pounds, 12 ounces!!!  That is a gain of over 2 ½ pounds in 4 weeks!!!  Wow.  I think it is safe to say the tube feeds of 900 calories per day are working.  Very exciting!

GI Appointment (4/21/11):
Last Thursday was Callie’s first follow up appointment with Dr. Enav since getting her tube.  He was very pleased with her growth.  She also grew a ½ inch in length (28 ½ inches).  However, he was concerned to hear she is no longer taking anything by mouth.  He would like me to offer her a bottle of EleCare at every feed before I put the formula through the tube.  This was our original plan, to get her to take as much from a bottle first before using the tube, but since returning home from the hospital she refuses the bottle every time.  I do not know if this is due to the disgusting taste of EleCare (at least to me) or because she never feels hungry.  We are going to step up the feeding therapy to see if we can improve in this area.
We are also going to make an appointment at the tube clinic to see if the nurses can help find a better way to keep the tube in place on her little face.  The tape keeps rolling back and needs to be replaced daily, but the supply company/insurance does not provide enough tape to make such regular fixes.  And of course the tape cannot just be picked up at Walgreens.  It has to be special ordered and costs up to $4 per piece!  Her cheeks also get irritated from the tape, so maybe the nurses can come up with a better way to affix the tube. (Update: This appointment is now scheduled for May 11^th.)
Dr. Enav advised another appointment that has to be made is a follow up endoscopy at the beginning of June to confirm her esophagus has healed.  This will be a repeat of the procedure we did in the hospital last month where they put her under light anesthesia.  In addition, they will do an impedance pH test at the same time.  This is the procedure I described earlier that involves inserting a catheter through a nostril, down her throat and into her esophagus at the point where most acid reflux occurs.  A sensor on the catheter records the reflux for 24 hours.  We will be able to see if her current dose of Prevacid is taking care of her reflux or if it will need to be adjusted.  We hope that the endoscopy will show her esophagus has healed and the impedance test shows her reflux is under control.  (Update: This appointment is now scheduled on June 8^th.)
The final appointment that came out of this visit with Dr. Enav is our big upcoming appointment with the EE clinic.  This will most likely be our most important meeting in June.  It is my understanding that the EE team is made up of Dr. Enav (GI), Dr. Alpan (allergist), Stacie (dietician), Keisha (GI nurse), and Denise (allergist nurse/assistant?).  We will meet with everyone at once and they will come up with a plan for further treatment of her EE as well as transitioning her from the NG tube to solids taking into account any allergies she may have after her upcoming allergy test.  I am happy to be connected with a GI doctor that specifically specializes in EE (this was just luck – I picked him randomly before knowing Callie had EE, or ever hearing of it for that matter).  Apparently he is quickly becoming one of the top doctors in the country focusing on EE, and the EE clinic that he and Dr. Alpan have set up with everyone participating to treat a patient together at once is unique.
I learned something unfortunate during this GI visit about EE.  Apparently it is a chronic disease.  I did not realize this.  I thought she had an inflamed esophagus, we would let it heal for a few months, and then she would be done with it.  If I understood correctly, it is something she will always have.  Hopefully we will be able to keep it under control, but it will always be there and at risk for flaring up.  It is a relatively new disease and not much is known yet.  Hopefully there will be new information available in the upcoming years as more research is done.  At least for now we seem to be under the best medical care possible in the DC area.

24 Hour Video EEG (4/22/11):
Last Friday we checked into Children’s National Medical Center (CNMC) for a 24 hour video EEG.  Shortly after arriving Callie had many wires pasted to her head.  She did not like this procedure and cried during the 20 minutes it took to hook her up.  Then the wires were attached to a computer that recorded her brain activity and she was placed in front of a video camera.  I was asked to adjust the camera so that it remained on her for the duration of the test.  We had to stay in the room and just moved back and forth from her crib to a little couch.  It was an uneventful stay.  I just had to keep her entertained and prevent the wires from getting pulled.  There were some disappointments during the stay… CNMC does not have wireless internet or free food for parents!  Note to self: Stay at INOVA Fairfax (free room service-style food service and wireless access) instead of CNMC whenever possible!  The biggest challenge of the stay was getting the paste out of her hair after the wires were removed on Saturday.  I washed her hair 4 times before leaving the hospital and it was still a greasy mess.  Luckily it finally came clean after another 6 washes or so at home.  We were released promptly after 24 hours and told the results of the test would be received in a few days.

(Update: I waited until the following Wednesday for the results, but there was no word from our neurologist Dr. Pearl.  I emailed him as well as his nurse for an update.  I waited patiently for another 48 hours until Friday, a full week after the test.  I was hoping and starting to assume no news meant good news, so I was surprised when I got his nurse Meg on the phone Friday morning and she told me the results came back abnormal.  She sent me a copy of the report and it read:

EEG FINDINGS:  There is a posterior dominant rhythm of 7 Hz reactive to eye opening and eye closure.  There is intermittent bitemporal slowing.  The anterior to posterior gradient of amplitude and frequency was maintained.  Sleep architecture was normal, including the presence of synchronous and asynchronous sleep spindles in stage II sleep, as well as vertex waves and K complexes.  There were no interictal epileptiform discharges.  There were no clinical or subclinical seizures.  There were no push-button events.  

Heart rate was 136 per minute.  The QTC interval is not calculated.

IMPRESSION:  This is an abnormal EEG due to the presence of intermittent bitemporal slowing, consistent with the known structural abnormality.  No clinical or subclinical seizures were captured.

I did not know exactly what this meant and was suddenly upset no one had called and explained the results.  I fretted all day and worried I would not have an update before the weekend.  Then Dr. Pearl called and set my mind completely at ease.  He is always wonderful to talk to.  He apologized for taking so long to follow up and advised he was very pleased with the EEG.  He said there were no seizures or signs of infantile spasms.  Yes, there was a little slowing, but nothing compared to what her EEGs showed last year.  He said this abnormality can be expected because of her PMG and he is not concerned about it.  She can remain medication free at this time and instructed me to call immediately if she has any signs of a seizure.  I hung up, said a prayer of thanks, and shed a few tears of relief and joy.) 

Allergy Patch Test (4/25/11):
This day was the start of another busy week (7 scheduled appointments!).  Our second appointment of the day and week was to get an allergy patch test placed on Callie’s back.  They placed small spots of pureed food (19 different types) under a large sticker/patch on Callie’s back.  

We received instructions to leave the patch in place for 48 hours and then remove it and take pictures.  We were then to return to the office 24 hours after that to get the test results read (4/28/11).  I was very disappointed to learn Callie is allergic to most of the foods they tested! 

Most allergic -- egg, wheat, soy

Moderaterly allergic -- chicken, turkey, beef, oats

Slightly allergic -- pork, corn, bananas, peas, potatoes, rice, barley

Not allergic -- milk, green beans, carrots, tomatoes, apples

This makes me very concerned about introducing solids back into her diet, but I am trying not to think about it too much right now.  I have high hopes that the EE team will know what to do and I will wait to find out the big plan in June.

I think that sums up the major events of the last two weeks.  Callie has been her usual happy self and seems to be doing especially well in her therapies (PT/OT) lately.  We are pleased with the progress she is making in her growth and development!

Recent Pics

We have been very busy lately!  Here are recent pictures:

 

 

 Trip to Florida:

First haircut:

Last photos before the tube:

Trip to Puerto Rico:

The tube feeding is going well.  We have a routine now and everything has been going pretty smoothly.  I swear Callie is getting bigger every day!  She is growing right before our eyes.  She feels heavier and her size 3 diapers are finally getting smaller.  We do not have another weight check for a few more weeks but I think I am going to have to sneak in and use the pediatrician's scale in the meantime because I am curious to know what she is gaining.  This coming week we will meet with Dr. Enav, her GI doctor.  I am anxious to hear what he thinks about her growth so far and what he thinks about a plan/timeframe for getting rid of the tube!

Thriving!

Well, I wish I could report that it was smooth sailing after we returned home last Friday night, but it was anything but.  Callie vomited at nearly every feed for the first 24 hours.  I was in a state of panic, thinking with dread that we were headed back to the hospital.  Instead, the GI doc on call gave me instructions for slowing down her pump rate and reducing her feed quantities.  We were both very sick over the weekend and I think that is what contributed to her problems.  By the end of the weekend luckily everything was more under control and I am happy to report things have gone a little better each day since.  

Unfortunately she is now refusing all bottles and taking everything by tube, but I have been able to get her full daily goal amount of 900ccs/30ounces into her for the last five days.  It took a few nights of slow 12 hour feeds, but we made it.  And today I learned it is paying off... She had a weight check and is up to 17 pounds, 11 ounces!!  This is a gain of just over a pound and a half!  This is huge and I am thrilled!

We are going to stay with this EleCare-only diet for another 6 weeks or so until her esophagus heals and we complete her allergy testing.  Hopefully we can then start adding solid foods back into her diet and again start working on her oral feeding skills.  It is my understanding our goal for her weight is around 19 pounds.  Our next weight check with her pediatrician is on May 12th.

Hospital Updates

SATURDAY:
Unfortunately we are still in the hospital.  I received a little more information about her condition.  She has what is called eosinophilic esophagitis (EE) which is the specific diagnosis for her inflamed esophagus.  It takes up to two months to heal after you eliminate what is causing the inflammation, which is most likely reflux or a food allergy.  The biopsy results should tell us more and will be available in a few days.  We will see a team of doctors who specialize in EE once released from the hospital and they will come up with a plan as far as food goes.  At this time, all solids have been eliminated from her diet (much to Callie's delight) and she is only consuming EleCare formula (which she does not love, but is taking for the most part).  We are going to step up her speech/feeding therapy to make sure she does not loose any oral eating skills while we take the break from solids.  The EE team will probably order an allergy patch test.  The dietitian here in the hospital is also recommending that we complete a swallow study.  Just what we need these days... more appointments!

We are still in the hospital because Callie is having a hard time tolerating the NG tube.  She has been very uncomfortable when anything passes through the tube, even a little medicine or vitamins.  She has also been gagging and then vomiting after eating.  They weighed her today and she has lost weight since checking in on Thursday.  The GI doctor stopped by this morning and said he suspects the tube might be in the wrong place, like too far in or coiled up.  If so, this could explain why she has been uncomfortable and vomiting.  They ended up x-raying her abdomen and sure enough the tube was a little too far.  So we pulled it out for now to give her a little break and later this afternoon we are going to re-insert a new tube.  Not only will they make sure it is not inserted too far, but they are also going to change the tube size so that it is thinner.  Hopefully this will make it more comfortable for her.  We are going to hopefully see an improvement with her eating today and then a successful tube feed this evening.  If everything goes well, we should be released.  Fingers crossed.

Here is my little trooper waiting for her x-ray earlier:

SATURDAY EVENING:

Well, we are staying for another night.  She now has a smaller, thinner tube and is doing much better, but had another vomiting incident earlier this evening.  Overall she seems much more comfortable, but we don't know why she threw up.  The new plan is to give her a small bottle around 9:00 and then put her on a continuous, slow feed overnight.  Hopefully all goes well and we can finally go home tomorrow.

On a side note, I have dropped two tubes into her now.  The first time was very traumatic for both of us.  The second time I felt much more comfortable and now feel confident I will be fine if/when I have to replace the tube at home by myself.  This is a huge relief!


Fun at the hospital tonight:

SUNDAY:
This is crazy, but we are still here!  And we will be here until at least tomorrow!  Last night was awful.  Callie started vomiting everything she took in.  Her overnight feed started at 1:00am while she was asleep.  She woke up within 15 minutes, was uncomfortable, and pulled out her tube.  So we had to drop a new tube in her in the wee hours of the morning.  Fun.  Shortly afterward I fed her a bottle and she immediately vomited.  Sometime in the 3am (or was it 4am??) hour the resident on duty wanted to give her an IV fearing she may start to become dehydrated.  I really did not want to do that because that would mean after 3 full days and nights in the hospital we would have yet to successfully feed her through her tube!  How were we ever going to go home?  I felt we really needed to get to the root of the problem... was she not tolerating the tube or the formula?  If we gave her an IV and waited for the doctor in the morning, we would just have to stay another day/night and try everything all over again.  The nurse agreed with me and we talked the resident into paging the senior resident on duty.  The senior resident said to start giving her Pedialyte, not an IV.  I was happy with this idea because we could try something else through the tube besides the Elecare.  Shortly afterwards she was hooked up and taking in the Pedialyte without a problem!  It was a relief to know the tube could work for her. But to make the puzzle more complex, Callie broke into a fever around this time.  So we did not know if all of this was due to her being ill or if the formula was not agreeing with her.  First thing this morning Dr. Lee, our GI doc while here in the hospital, came to see us.  He was sorry to hear about our rough night and said he feels like it is very unlikely she can not tolerate Elecare.  It is an amino-acid based formula and extremely hypoallergenic.  He thinks she may have picked up a virus which is causing these issues, not the formula.  His orders were to switch from 100% Pedialyte to 50/50 Pedialyte/Elecare and stay on that for 12 hours.  If all goes well, we will then try to switch her back to 100% Elecare and see how it goes.  All of this will be on a slow continuous feed.  In the meantime, he wanted her tested for RSV, flu and possibly rotavirus.  So far today they tested her for RSV and flu, and the results were negative.  We will at least be here until tomorrow.  It sounds like we will be here until she can take 100% formula at normal feeding intervals (not a continuous feed).  I am hoping and praying this does not take long!  


I can't believe tomorrow will be our 5th day.  I am going stir crazy in the hospital and Allen has been trying to juggle work and taking care of Owen.  He is supposed to leave town this Tuesday for business so I hope we make it home in time.  Callie and I are also supposed to be back in the hospital this coming Thursday for her 24 hour EEG, which will be the very last place we want to be!  Since we are stuck here I asked if it could be done at the same time, but I guess you can not mix GI and neurology work.  Besides, our neurologist is with Children's National Medical Center, not INOVA Fairfax, so I guess we are stuck with both hospital stays.


I will say that the staff and service at INOVA Fairfax has been very good.  I have been very pleased with every nurse that has taken care of Callie.  They also have a program called Child Life which provided a basket full of toys and books for her to borrow during our stay.  Another person came by with a cart of books that we could choose from to keep.  And just now another lady stopped by with a service dog for Callie to interact with.  The food service has also been impressive for a hospital.  I can order from a menu any time just like hotel room service.  Too bad they don't have a gym.  :-)


Callie and Maddie:

MONDAY:

It just keeps getting better.  Today we were placed in isolation.  Because Callie is running a fever and has had a little diarrhea, she is considered possibly contagious.  We are not allowed to leave our room.  And children are not allowed to visit, so this means our daily highlight of a visit from Allen & Owen will not happen today.  :-(  

Last night was rough.  I was optimistic everything would go smoothly and was thinking yet again we would be leaving in the morning.  Then around midnight her tube feeding was changed to 100% formula.  Very shortly afterwards she started rolling around in discomfort and things went downhill from there.  She threw up and for the fourth night in a row we were changing her bed linens in the middle of the night.  A little while later we discovered she had spiked a fever up to just over 103.  The nurse consulted with a resident on duty who came in to explain they wanted to do blood and urine tests.  During the 2:00am hour my poor baby girl was traumatized by the process of getting a urine sample through a catheter.  The blood draw was supposed to follow.  I kept her awake during the 3:00am hour waiting for someone from the lab complete the draw.  At 4:00am Callie and I were exhausted and I decided it was time to lay down while we waited.  We both quickly fell asleep and as soon as we did at they came into the room for the draw. I warned them that Callie extremely hard to draw blood from and to send the absolute best person.  Despite this warning, the woman was unsuccessful with the draw.  So Callie was woken up and completely traumatized and we did not even get the sample.  We dropped back into bed after 5am. 

This morning a new GI doctor came into the room to discuss Callie's case.  I quickly learned we will be spending yet another night and will at least be here until tomorrow.  Today's plan is to keep her on 50/50 Pedialyte/Elecare until this evening when we will try once again to switch her to 100% formula.  Again, it sounds like we will be here until she can take 100% formula at normal feeding intervals (not a continuous feed).  How much longer can this possibly take?!

MONDAY NIGHT:

We made it through a day of isolation.  Callie stayed on the 50/50 Pedialyte/Elecare mix at a slow, continuous feed all day and they decided to continue this through the night.  This makes me extra hopeful we will finally get a decent night of sleep (if that is possible in a hospital!)!  Let's hope there are not many helicopters landing/taking off from the helipad outside our window tonight.

TUESDAY:

Day 6.  I don't know why I continue to get my hopes up for a decent night of sleep.  I went to bed at midnight (yes, I realize that was an error in judgement, darn Facebook) and she was restless and fussy by 12:30.  She pulled her tube half way out and I was able to get it back in without any major issues.  She was half sleeping, half fussing at 1:00 and 1:30.  Then at 2:00 she started wailing.  I turned on a light and saw she had pulled her tube all the way out.  :-(  Her fever was also higher.  We gave her Motrin in addition to the Tylenol she was already on and replaced her whole tube.  This is still  traumatic for her, but not as much so for me now.  I successfully dropped it in for the third time and we were in bed for the night around 3:00AM.  I also learned in the middle of the night that she tested positive for "c. diff" (clostridium difficile).  Apparently this is a bacterial infection and was caused by the amoxicillin she was on recently for an ear infection.  It is currently causing her fever and diarrhea and hopefully explains why she has not been able to tolerate her new formula.  She is now on another antibiotic and we will hopefully see her symptoms clear up soon.  Then we can hopefully make progress with her tube feeding and get out of here.  This afternoon they increased her food to 3/4 EleCare and 1/4 Pedialyte and she is tolerating it, so we are making progress.  Baby steps.  The GI doc estimates we will be here for a couple more days and we continue to live in isolation. <sigh>

WEDNESDAY:

Day 7.  It was by no means a great night of sleep, but it was the best I have had so far.  Callie was very restless, so I was up and down throughout the night checking on her, but we did not have any major drama until 6:00am when she pulled out her tube.  It has been a little bit of a rough morning because she is very congested and her nose is running.  She keeps trying to wipe her nose and sometimes her little thumb catches on the tube and pulls it right out.  It happened again at 9:00am.  

On a good note, Callie was able to get therapy today.  Usually she attends PT, OT or speech/feeding nearly every day of the week.  Last night it struck me that we have been here for a week now and she has not had a session in a while.  I asked the nurse if they have any PTs or OTs in the hospital who could work with her.  The nurse said she would have to ask a doctor to see if that could be ordered.  To my surprise, my request was approved and Callie had all three therapies today!!  First a speech therapist stopped by our room, then PT, and lastly OT!  So we had a busy and productive morning.  It was nice to focus on something else and Callie seem to enjoy the exercise.  Here she is during her PT session:

Also, they decided to move us to another room.  While the room is very similar, a slight change of scenery is nice, especially given our continued isolation status.  You will notice the PT above is wearing gloves and a yellow gown.  Any time someone walks into our room they are required to suit up like this.  The other thing about this new room is that the helipad is no longer outside our window!  I took a picture of the helicopters before we moved.  :-)

So hopefully we will only be here another day or so.  I had to cancel Callie's 24 hour EEG at CNMC that was scheduled for tomorrow.  I was able to get another appointment in 3 weeks.

Callie is still on 3/4 EleCare + 1/4 Pedialyte mix.  They will be changing her to 100% EleCare later today if her stools continue to improve.  We are also hoping her fever stays away.  Unfortunately it was still 101.1 this morning, so she is still on Motrin.  They just took her off of continuous feed, which is great.  This means she is free from the pump for the next couple of hours and then she will be attached for a two hour increment at an increased rate.  Hopefully this transition goes smoothly.  If all goes well there is a chance we will be out later tomorrow, but I don't want to get my hopes up. 

I cannot thank you enough for all of the support, encouragement, thoughts and prayers!  It means so much to me!  xoxo

WEDNESDAY EVENING:

Good news: We are now on 100% EleCare!  Also, the flow rate on her pump has been increased to 70ml/hr.  They are going to keep increasing the rate until she is able to take in a whole feeding (120ml) within 30 minutes.  This should happen by tomorrow morning if she continues to tolerate the changes.  Then in theory we can practice a "normal" feeding of letting her drink from a bottle and giving her the remaining formula through the tube.  This is going to be our plan at home.  Of course by the time we get there after a three day break, she probably will not want to drink formula from a bottle.  And I don't even want to think about what it is going to take to eventually get her to eat solids again.

Bad news: Her fever is up again.  101.4.  I have been afraid to ask if they will let us go home with a fever or if we have to wait it out here.  

Wish us luck tonight!

THURSDAY:

Day 8.  Day 4 in isolation.  I.am.going.stir.crazy!  Callie pulled out her tube within an hour of going to bed last night, but luckily the night was without any major drama after that.  She was just very restless again all night, I believe mostly because she is very congested and her nose is running so much.  She continues to keep wiping at her nose which occasionally pulls the tube partially or all the way out.  So after she pulled it out at the beginning of the night, I would jump out of bed (actually a chair) and check on her every time she started rolling around and rubbing at her nose to make sure it did not get pulled out again.  I am really tired again today.

The good news is she is tolerating the 100% formula feeds and she is taking them in at our goal rate of 120ml in 30 minutes.  At our last feed at noon, she took 3 ounces from a bottle and then we fed her the last ounce through the tube.  This is how we will work the feeds going forward.  Also, her fever seems to have gone away and her loose stools much less frequent.

I am waiting for the GI doctor to come in and discuss everything.  I am starting to feel hopeful we may be released tonight.  I would think tomorrow would be the latest.  Fingers crossed.  Again.

THURSDAY EVENING:

Well, we are here for one more night.  Dr. Louis-Jacques has been our GI doc here in the hospital for the last couple of days.  He said we should be discharged tomorrow if she continues to do well.  In the last update I said she had reached our goal of 120ml in 30 minutes.  I misunderstood -- our goal is actually 190ml in 30 minutes.  We should hopefully get there by tomorrow morning.  The plan is to have her drink this much every 4 hours, 5 times per day.  She will remain on this EleCare formula only diet for the next two months.  This should keep allergens out of her diet while giving her balanced nutrition and enough calories to thrive.

Dr. L-J said the biopsy results did not clarify if we are dealing with a food allergy or reflux, so it is best to treat both.  The EleCare only diet should take care of any allergies.  We will also be making an appointment with Dr. Alpan for a patch allergy test.  Based on the results of this test, the doctors will decide how and when to introduce solids back into her diet.

To address the possible reflux issue, Callie will remain on Prevacid.  In addition she will likely undergo a 24 hour test about two months from now called esophageal pH monitoring.  In the procedure a doctor will insert a plastic catheter through a nostril, down her throat and into her esophagus at the point where most acid reflux occurs.  At the tip of the catheter is a sensor that detects acid and it passes this information back through the catheter and out of the nose to a recorder that monitors the amount of reflux.  At the end of 24 hours the doctor will remove the catheter and study the readings to see if reflux is still an issue.  At the same time they conduct this test they will do another endoscopy to view her esophagus again.  In two months we hope to see it healed.

Thank you for keeping Callie in your prayers while we work through these issues.  We also have much to be thankful for... Callie continues to be seizure free!  I am so thankful for every day that passes without a seizure!

FRIDAY:

Day 9.  Day 5 in isolation.  This HAS to be our last day, right?!  I have to admit, I am sitting here completely packed and ready to go.  I am so hopeful we are going to escape this afternoon.

It was another restless night, but Callie made it through without pulling out her tube.  Her 2:00am feed went well, but when they increased her to 190ml for the 6:00am feed, she vomited within 15 minutes of when the pump turned off.  She threw up 4 times until she had apparently thrown up the whole 190ml.  I was thinking about it this morning and realized that was 6 oz, which is more than she usually takes.  So instead of making our goal 6 oz, 5 times per day, I asked the doctor if we can lower the amount to 5 oz, 5 times per day and then make up the missing 5 oz during a night feed.  He agreed this sounded like the best plan for now until she can take in a larger volume, but it is going to be tough to squeeze this all into her in a 24 hour time period.  She gets up at 10:00am.  If we feed her at 10:00am, 2:00pm, 6:00pm, and 10:00pm we have to figure out how to get 10 more ounces into her between the time she goes to bed and gets up.  I think this is going to require me to turn on her pump around 1:00am and then work another feeding in around 6:00am.  Who needs sleep anyway.  Sleep is for the weak.  I do not really look forward to this new schedule and I can see how we are going to have to be very punctual with the meal schedule, but we will do what we need to do to get all of the calories into her.  Hopefully she will grow soon and be able to take in a larger volume of formula at each meal.

We decreased the volume of her 10:00am feed this morning to 5 oz and she kept it all in.  So now she is taking a little rest and we will try another 5 oz at 2:00pm.  If that feed is also successful we are supposed to be released!!  I cannot tell you how anxious I am to go home and see my boys.  Hopefully just a few more hours...

FRIDAY 4:35PM:

We just received the green light!  They are working on all of the paperwork and we should be out of here in about an hour.  Hopefully I remember where the truck is parked.  I am soooo excited!!  

Thank you again for all of your support, encouragement, thoughts and prayers this week!  xoxo

Tube Update

Thank you so much for all of your thoughts and prayers!  It was a long day, but we made it.  This morning we headed to Fairfax for an endoscopy.  They decided to take a look at her system before inserting the NG tube.  Unfortunately this meant putting her under.  It was very hard holding her little hand and watching her quickly slip into a deep sleep.  I cried and then went outside to wait.  The procedure ended up being pretty quick.  They looked around and took some images and biopsies.  I was a little surprised to learn they discovered something -- her esophagus is inflamed.  The GI doctor said he feels this is probably due to reflux or a food allergy.  They decided to put her on Prevacid and special EleCare formula to hopefully take care of either or both of these issues.  

After the endoscopy we checked into our room.  After getting settled and letting Callie rest for a little while a nurse inserted the NG tube.  I cried again.  I was an emotional mess today.  It was hard seeing her discomfort while it was inserted, although it only took a matter of seconds.  It was also just hard seeing her with a feeding tube.  :-(  This afternoon and evening she drank three bottles of her new formula, although gagged and vomited twice.  We are still waiting to see if she is having a hard time with the formula or just adjusting to the tube.  As I write this she is now attached to the pump for the first time receiving her first feed through the tube.  I have to say it is somewhat comforting to know she is receiving much needed calories and nutrition while peacefully sleeping.  

Tube Time

So much has been happening.  I wish I had time to write more often.  A week and a half ago things got much worse with Callie's feeding.  She suddenly started resisting solid food (more so than usual).  Then for two days she was not able to drink milk from a bottle.  It was as if her mouth was not coordinated enough to latch onto her bottle.  I ended up feeding her milk by a medicine syringe.  Then she got the hang of the bottle again, but refused all solids.  So then I was feeding her baby food by syringe.  A few days into these eating problems she started vomiting.  While eating or drinking at some meals she would gag and then throw up.  It was very stressful and frustrating since I was counting every calorie and trying so hard to get her to eat.  I could not figure out if there was a neurological issue (since she is weaning from Topamax and suddenly could not figure out how to drink from a bottle), if she was having an aversion to formula (since I had just started adding it to her milk and food for more calories and nutrition), if she was possibly just being stubborn about eating, or if maybe she was sick.  After two days of this periodic vomiting I was worried about dehydration and took her in to see the pediatrician.  It turned out she had the beginning of an ear infection.  Sad, but I felt like this was good news.  At least there was some sort of answer as to why she had been “off” and I was hopeful things would be better soon.  After starting the antibiotic she thankfully stopped throwing up.  She also went back to taking bottles just fine, with or without formula (but definitely prefers without).  And she started eating solids again, but only in very small quantities and only with effort on my part.  She just does not like to eat.  L 

The day I took her to the pediatrician we also had an appointment with a new dietician.  I felt much better about the information and advice this woman gave us compared to the last.  She was much more concerned with a balanced diet (vs. just feeding Callie fat & cream) and gave me good suggestions.  But at the same time, she agreed Callie was not getting nearly enough calories and it seemed doubtful this was going to change any time soon.  I explained Dr. Enav was giving me 6 weeks to put weight on Callie before we were going to go with a NG tube, but at this time I really felt like there was no way we were going to make it that long.  I said we were about to go out of town for a week and then would be back two and a half weeks before leaving again.  As much as I did not want to, I asked if it would be wise to go ahead and move forward with the tube next week between the two trips.  She stepped out of the room to consult with Dr. Enav and then returned to say yes, this sounded like the best plan.  

So at the end of this week we are planning to move forward and get the NG tube.  It involves a 1 to 3 day hospital stay.  Apparently they will insert the tube and make sure the feeds are working for Callie.  A nurse and dietician will then train me to use the pump and administer her new diet.  We will need to carefully decide when and how much to feed her through the tube so that we can continue working on getting her to take as much orally as possible.  Finally, I will have to learn how to re-insert the tube in case she pulls it out.  I am pretty worried about this part.  At this age I cannot imagine her leaving a tube in her nose alone, so it is probably safe to assume this is going to happen.  There is a reason I did not choose nursing as a profession… I don’t know how I am going to handle inserting a tube into her nose, down her throat and into her stomach, making sure it does not end up in the wrong place.  L  I am very uncomfortable with this idea, but like everything else you do what you have to do.

We will be in the hospital this Thursday.  Please keep us in your thoughts and prayers.  Hopefully everything goes smoothly and it is a quick adjustment period for both Callie and I, especially since we will soon be traveling again.  In the meantime, we have to keep praying she remains seizure free.  She just had her last dose of Topamax this weekend, so for the first time since last May she is not on a seizure medication!

Music To My Ears

CALLIE MADE HER FIRST CONSONANT SOUND THIS WEEK!  Very exciting!  :-)

Roller Coaster Week

This past week was filled with ups and downs.  

UP: It started off with a great PT session.  I think it seemed great because Callie's last session of the previous week (OT) was a bust.  She was just uncomfortable (most likely reflux or constipation) and we really did not get much out of the session.  At this week's PT session, Callie was very happy and she did great.  She was rolling fluidly, sitting solidly, reaching for everything, and successfully transfered weight to one arm while reaching out and up for a toy with the other while on her tummy without tipping her head and rolling over to the side (hard to explain, but an accomplishment for her).  While on her tummy she proceeded to kick happily.  It was a good day.  

DOWN: The next day was our monthly weight check.  I was looking forward to seeing a good gain.  I had actually gone into our pediatrician's office the week before and quickly borrowed their scale to weigh her because I could not stand the suspense of waiting another week to see if she was gaining.  The week before I was thrilled to see she was up to 16lbs, 8oz.  This was a 13oz. gain in 3 weeks which was great for her!  And I was excited because we still had another week before our official weigh in.  So when we got there last week and she weighed just 16lbs, 5oz., I was disappointed.  This was still a gain of 10oz., but I was expecting more than 13.  There was no change in her length or head size.  Her pediatrician is still concerned because she is not on the growth chart and not following a curve.  After this appointment we met with the nutritionist.  She was pleased our average calories per day have increased from about 550 last month to 750 this month, but said this is not nearly enough.  She wants Callie to be getting 1000 calories per day.  This was upsetting to me because I just do not see how this is going to be possible.  I am working so hard to get every single calorie into her each day and she simply will not take in any more food or milk.  I am trying to spike everything with fat, cream, or various types of medical food supplements or powder (Benecalorie, Duocal, etc.), but since she takes such a small quantity of food (1/2 jar of baby food or a 4 oz. bottle of milk at a time), you can only add so much before the flavor or texture changes, which makes her refuse it all together.  So I felt discouraged after this appointment.  We will be back in one month for another weight check and nutrition appointment.

UP: Next we had our first therapy session with a developmental specialist.  She now comes to our home every other week to facilitate communication and cognitive development through play.  Callie seemed to like her and was very engaged and quite vocal.  Some other PMG parents have mentioned this type of therapy has been very beneficial for their children, so I am hopeful this will be a good thing for Callie.

DOWN: Then we had our first GI appointment.  We saw Dr. Benjamin Enav.  He was nice, but straightforward.  He said Callie should be getting between 900 and 1000 calories per day and her feedings should take no more than 20-30 minutes (sometimes we sit for a long time struggling to get just a 1/2 jar of baby food down).  He said I am doing the right thing by adding as many calories as possible to what she eats, but she just does not eat enough.  He said he feels it is going to be best to start tube feeding her.  I was not surprised, but not happy to hear this.  I told him we are currently weaning her off of Topamax and that I am hopeful this will make her appetite increase soon.  He agreed to give us more time to see if this is the case.  We are going to wait 6 weeks.  If she has not put on decent weight by the time we are back in 6 weeks, he will urge us to start her on a nasogastric (NG) tube.  This type of feeding tube would go in her nose, past her throat, and down into her stomach.  He said she would receive night feedings through the tube while she sleeps so that she will not have to consume as many calories during the day.  This will help her get the nourishment she needs to thrive.  The thought of her on a feeding tube makes me very sad, but I will do whatever is best for her.  In the meantime I am to make sure she takes Miralax daily to eliminate constipation from the equation.  Dr. Enav said he wants to make sure she is not uncomfortable and failing to eat as much for this reason.  We are also going to see a dietitian in his practice.  This new dietitian also comes highly recommended from Callie's feeding therapist.  I left the appointment feeling sad, but determined to work as hard as ever to get the calories into her in the upcoming weeks.  We will just have to wait and see what happens.

UP: Thankfully the week ended on an up.  A social worker and nurse came to the house to screen Callie for Medicaid.  I learned from my new special mom friends that there is a way for children with special needs in Virginia to apply for Medicaid that does not take their family's income into consideration.  Callie qualified!!  This is potentially huge.  If everything falls into place, Callie will have secondary medical insurance and will be eligible for many benefits.  I am very excited about what this could mean for her and our family.  We should know within 45 days if everything goes through.

That sums up the highs and lows of this past week.  It was a quite a ride as usual.

Schuyler

The day after returning home from the hospital last year, Allen found a blog about a special girl named Schuyler ("Skyler") who has the the same type of PMG as Callie.  It was the first time I saw a picture and read about a child with PMG.  The author of the blog is Schuyler's father.  The date was May 7th and the current entry (http://www.schuylersmonsterblog.com/2010/05/purple-snowflake.html) said "She's a ten year-old girl who wears a bra and wants to experiment with makeup and dances around the living room to Lady Gaga. She argues with her parents; she fake pouts when she wants something and does it for real when she doesn't get it."  I started crying when I read this. It gave me hope that Callie in some ways could lead a typical life.  I needed this hope after just hearing that she may not ever be able to walk or talk.

In the weeks that followed, I became consumed with reading about Schuyler.  I went back and read every entry about her in the blog, found videos of her on YouTube (cried when I saw this one: http://www.youtube.com/watch?v=5IWDvwvbWLA), and read the book her dad Robert Rummel-Hudson wrote called "Schuyler's Monster: A Father's Journey with His Wordless Daughter".  In many ways she is able to live typically, but Schuyler is unable to speak due to her PMG.

When we went to Seattle to see Dr. Dobyns, he asked me if I had "read the book by the father".  I said yes and he said he felt like Callie's case is similar to Schuyler's.  Since then, every time I read about Schuyler, I can not help but think that might be Callie in 10 years.  Sometimes I wish and pray Callie will be as well off as Schuyler.  I think, “If only she can walk/dance/jump around, attend school, and have a couple friends, things will be good, even if she is unable to speak.”  If this is Callie's future, things will be good (just google infantile spasms & polymicrogyria and you will quickly realize that this would be a very fortunate future indeed), but I can't help to think things will also still be so hard.  It breaks my heart to think about never having a verbal conversation with my daughter, especially considering I talk to my own mom most days.  I am sad when I think about how difficult things will most likely be for her socially.  It will still be a very tough road, even if she is blessed enough to have most abilities except for speech and more minor cognitive challenges.  I know my heart is going to break over and over again for her, and this is probably our best case scenario.  In reality, Callie's case may be worse than Schuyler's due to her IS (thankfully Schuyler never had IS and has been seizure free to date), but I will continue to hope for the best and try to keep everything in perspective.  I know things can always be much worse and need to remember there is no way to know what the future holds.  I should not waste energy worrying over something I can not control…easier said than done for me, that’s for sure.