Life Outside the Hospital is AWESOME!

I have hesitated to post it...afraid to jinx us.  I know, silly.  But life has been chugging along so well that I don't want it to end.  But we are having so much fun- we just have to share it!  Here is a glimpse of our life in the last couple of months with Zoe feeling mostly well.  A few little colds, bladder infection, etc but no major illness.  It is AWESOME!

 I have to type it- "Our life is so bright, we gotta wear shades..."

 On the merry-go-round at Chuck E. Cheese

 Trying out the tractor at the pumpkin farm.  Ailsa picked a nice, small, easy to carry pumpkin.  Zoe picked out a monster pumpkin and when I told her it was too big for me to carry she told me to roll it to the car and up the ramp!  

 Hockey, hockey, hockey.  Every Saturday morning Ailsa's plays hockey.  And every Saturday morning, Zoe yells at us until we agree to take her.  Actually, even after we agree she keeps on yelling until we get her in the car, as if we are going to forget her!  The first Saturday, Zoe was cheering so loudly that Ailsa stopped skating and yelled, "Yes, I hear you Zoe!"  Zoe has been vocalising more and more.  She tells us she wants to use her mouth to talk like Ailsa.  Who knows, maybe some day she will.  For now, it is really great to hear Zoe using her voice.  She makes some pretty hilarious sounds.  And she is LOUD!

Zoe has been feeding herself more and more.  She has really learned how to manipulate objects with her small "contracted" hands.  She is great with food she can bring to her face and drop in to the palm of her hand while her lips grab it and she uses her fingers to push it in.  She is still learning what to do with sticky food like mashed potatoes, noodles, etc.  Shoving her hand in her mouth and licking it just does not seem to occur to Zoe.  It is fascinating to see her eating skills develop.  

Overall, we have seen Zoe develop these last few months.  It is amazing how a few months of not being seriously ill allows Zoe to flourish.  She has gained a bit of weight (1kg/ 2.2 pounds) and this has made a big difference in her strength.  She walked all the way to Tim Horton's (a favourite restaurant in our neighbourhood) several times.  It is about .5km/ .8 of a mile away!  Zoe has also gained some upper body strength and can sit up tall the entire half hour horse ride at therapy.  All that muscle gain has been great for her core muscle strengthening- Zoe is able to have really deep coughs now.  Why does this excite us?  Zoe is able to clear more junk from her lungs.  Between chest physio, suctioning and Zoe's deep coughs we have kept Zoe's lungs clear of pneumonia so far.  She has had junky lungs since late September (this will never change- it is just how Zoe's lungs are) but so far we have kept the junk moving so it is not sitting and growing bacteria.  This is AMAZING!  

Like I said, "Everything is awesome, everything is cool when you're part of a team.  Everything is awesome when you're living out a dream."

Ok, maybe we have watched the Lego movie one too many times...  I know a certain 8 year old who will be very excited that a certain movie with small unintelligible yellow creatures is being released to DVD soon.  We have never actually seen the Minion movie but Zoe has been talking about it for months!  And it will give us a break from "Frozen"!  So it better be good!

Zoe is Home- She is Doing Great!

Zoe came home on Tuesday.  She ended up staying a few extra days because she had a fever and they wanted to make sure it was not an infection from the g-tube.  The day after Zoe came home she was ready to go!  This is us walking at the park.  This park has a great fountain Zoe loves but we made her just touch the water with her hands, not get soaked under it like she loves.  We didn't think getting the bandages soaked in a public fountain would be the best thing for a new surgical site!  Zoe has been doing great- she is tolerating all the tube feedings and still eating lots of food with her mouth.  The tube feedings do not seem to curb her appetite at all which is great- that is what we hoped for.  Zoe will still eat as much as she always has (which is quite a lot for a child her size!) and the tube feedings will just be extra calories to boost her growth.  When Zoe is sick, we can use the g-tube for hydration the same way we used the nasal feeding tube in the past.  And if Zoe is really sick and does not have the strength to eat, we will have the tube ready to go and she does not have to go through the  procedure of us shoving a tube down her nose.

Sister Bonding

As always, Ailsa has done amazing with all these changes going on.  She visited Zoe in hospital and they loved playing together.  The picture below is from the rooftop patio at the hospital.  Zoe loved sitting outside in the shade.  The fresh air was great for her lungs which became a bit junky after the anaesthesia and laying around in bed.  Normally we would give Zoe chest physio which involves hitting her back firmly.  We did not want to do this and cause Zoe pain at the incision site so her sitting up and getting fresh air was very important to clear her lungs.  At first, sitting up was painful for Zoe but luckily she had a little sister to help distract her!

I Want to Be Zoe!

Ailsa always says, "I don't want to be like Zoe, I want to BE Zoe!"  Here is a picture of the girls both playing in walkers.  Zoe is in her new walker and Ailsa is in Zoe's old walker.  As you can see, the new walker is quite a bit bigger than the old one which is why the new one does not fit in our car if we are carrying anything else.  We love how fast Zoe can go in the new walker.  It also supports her in a more upright position which is great for her spinal development.  Ailsa often says, "Zoe's new walker is too fast."  It is not often you hear that complaint about disability equipment!

Surgery Went Well

 Zoe sleeping after surgery.  They were able to do both the g-tube insertion and the eye surgery at the same time.  Zoe had a lot of pain after surgery but did really well.  She also had a lot of gagging which is why they have the drainage tube in her nose.  That way she does not throw up.  They were not able to get the bigger size tube either in her nose or her stomach because Zoe is so petite.  So far the drainage tube is working well so that does not seem to be an issue.  With the g-tube, they will have to replace the current tube with a larger size before we can move on to the mickey button.  Which means another procedure in the surgery room but we will cross that bridge when we get to it.

 Despite being in pain, Zoe insisted on sitting with Lyn (no surprise there!).  I love the little smile she is giving Lyn.  Got to love that morphine!

The nurse could not believe Zoe insisted on sitting up after only 6 hours.  She sat for 20 mins and then had to lay down when her stomach was really sore.  We told the team, Zoe is a mover- she does not want to stay down!

Zoe is now able to have almost an ounce of clear fluids through her stomach tube every four hours so things are moving along.  Zoe was not impressed when she signed "milk" and we said she can not eat through her mouth for a few days!

Getting Ready for Surgery

Everything Set for Tomorrow

Zoe has been a little congested this past week but her lungs are clear so we are good to go with surgery tomorrow.  As the time approaches, Zoe is starting to get a little nervous.  She has had some great questions about what it will be like.  She is worried about the recovery period and having pain.  And in her little seven year old logic, Zoe is trying to bargain her way out of it by saying things like, "I'll just stay home all the time and eat to gain weight instead of getting the tube."  Zoe acknowledges that she knows this is necessary, she just doesn't like it.  I reassure her that I am feeling exactly the same!

Making Choices for Your Child

Every day parents of children with special needs make choices that no parent should have to make.  No one has ever asked me if I want Ailsa to eat with her mouth, use her legs to walk or if we want to implant medical devices in to her.  Many times these choices are not really choices in the sense of if we don't do this for Zoe, she can not survive.  But at the time of getting these things done it often feels like a choice and as a mom I get wrapped up in making sure we are doing the best.  Ok, not just wrapped up, I get a bit obsessive!  I know that all we can do as parents is make the best decision at the time with the information we have.  I know that.  But then I get overwhelmed with the feeling that choices we have made for Zoe have made such an incredible difference in her quality of life.  So these moments become a bit daunting.  I know that every parent is overwhelmed at times with making decisions for their children but I guess one difference with complex children like Zoe is that the choices we make for her could have serious consequences.

How to Handle Those Moments of Overwhelming Fear About Your Child

I have found some great ways to pull back from that fear and live in the moment.  Spending fun time as a family is a great way to just live in the moment and remember the important things.  We went to the Art Gallery of Ontario last weekend and had a great time.  The kids did amazing- we were there for 5 1/2 hours!  We found some great sculptures in the contemporary section that the kids could walk around and one of them you could actually go inside it.  Zoe walked all over the place in her walker.  I have to say, I was impressed at the staff being so respectful when this little, wild haired child was flying about in her walker.  Zoe loved an instalment in the sculpture room that played all sorts of sounds and had flashing lights.  She just stood there in her walker laughing and listening.

We made a stop at the gift shop on the way out and Ailsa said, "I want to get some paints because I really need to paint something now."  How could I say no to that!  Both girls made interesting paintings that night using brushes as well as their hands and feet.  It was great to see them inspired by great works of art.

If All Else Fails...

...go shopping!  Years ago we put away the infant onesies that made Zoe look younger than she was.  At the time, she was 2 or 3 and still fitting in to the 18 months size.  After surgery it will be important for Zoe not to pull on her tube or bandages.  Zoe is a very handsy little girl so this is difficult for her.  So we thought having some onesies that keep her hands away would be a good idea.  Zoe does not fit the 18 months size but we guessed she might fit the 24 month size (yes, she really is that tiny still!)  So I ran around on Monday looking at different stores trying to see who has the largest onesies.

What I found out- Carters makes the biggest 24 month onesie.  And they had a sale on all the short sleeve ones.  So the timing worked out perfect.  I tried the thrift store too but they did not have any onesies in the large size.  They did however have some super cute clothes for back to school!  How can I resist when things only cost $2?

I used to have this superstition (and maybe part of me still believes it) that if I buy things for Zoe she has not used yet she has to be around to use them.  Depressing thought, I know.

How Can I Say No?

Speaking of Family Time- Ailsa said this morning, "Can I stay home from PreSchool today to spend time with Zoe, I will miss her when she has her surgery tomorrow."  Ok, I realise that Ailsa uses any excuse to stay home, but really how could I say no?

Summer Already!

Wow, I can't believe it is summer time already!  Zoe's last day of school is Friday and we are going camping on Saturday- great way to kick off the summer and keep Zoe distracted from missing school too much.  My very pregnant friend Angela is going to camp with us.  She has an almost two year old who gets along great with Ailsa.  The two of them love hanging out.

Pictures From Last Couple of Months

Zoe and Ailsa were flower girls at Riann and Daine's wedding in February.  Riann was Zoe's first respite worker when she was a baby.  Riann went on to get a full time job but we are still close with her even though she does not work for us anymore.  Riann and Daine took care of Zoe while I was in labour with Ailsa.  Riann was the first person (besides us and the midwives) who got to hold Ailsa.  Daine was too afraid because she was only four hours old!

We are rolling our eggs down the hill on Easter.  Don't ask me why we do this- it is some crazy tradition in Gavin's family :)  The girls thought it was hilarious.  Alan was at the bottom of the hill catching the eggs before they could roll in to the street.  

Riding the zoo mobile.  Both girls love riding around and looking at all the animals.  Zoe had just gotten out of hospital from pneumonia so we were taking it easy and not doing too much walking.  Someone gave us a pass for the zoo as a Christmas gift and it has been well used- we are going every other week and sometimes twice in a weekend!

Playing in the ball pit at Zoe's school on family pizza night.  You can see Zoe's purple legs sticking out- she loves to bury herself.  As you can see, Ailsa is still a little cautious in the ball pit.  Zoe LOVES the ball pit.

Summer Plans

Zoe will go to camp the first two weeks in July and then we are all going to the 1p36 conference in Cincinnati, Ohio.  We are very excited!!!!  We have not been to a conference since 2010.  The conference has really grown since it started back in 2007.

After the conference we are going to drive to St Louis to see Gavin and my families.  I have four sisters, a brother, and many nieces and nephews in St Louis.  Gavin has a cousin with his family and his Aunt Patsy (who Zoe loves because she talks in a "funny" voice to her and knows sign language).  We are so excited to see everyone this summer.

Our road trip does not end there- we are then driving to Chicago to visit a family we met camping in Kentucky five years ago.  We bonded over the craziness of camping in 100 degree F weather and cave spelunking with your special needs child strapped to your chest.  This family has four beautiful children (at the time it was three) and one of the daughters has Down Syndrome.  We are excited to catch up and let our children play together.

By the time we get back from our big trip it will August.  We hope to do a camping trip in New York with my cousin and her family from Massachusetts.  And we will probably squeeze in another small camping trip closer to home if we can.

The Big Weigh In

The great news is that Zoe has grown 5cm/ 2 inches in the last year and continues to thrive and develop.  She amazes us with her persistence in learning new skills every day.  Zoe can now finger feed herself and hold on to her cup for long periods of time!!!!  This is big!!!!

Zoe feeding herself cake and whip cream at Gavin's Birthday dinner.  See how the whip cream is actually near her mouth now!!!!  She is so proud of herself.

Unfortunately, we have noticed that Zoe has not gained any weight in the last 2 years.  She has actually started to lose weight in the last few months, so she now weighs less than she did 2 years ago.  We have added calories to her food but it has not made a difference.  Zoe is not able to eat a lot when she is at school.  She does a great job and the teachers try their best but Zoe does not want to sit there for 45 mins and eat while the other children play.  Zoe has never felt hunger like most people do.  She could go all day without food and would not complain (she has done this for medical tests).  When she sees her friends playing after they gobbled down their lunches, she clamps her mouth shut until the teacher gives up and lets her play.  Zoe has also been very tired in the mornings, so sometimes we are only able to get a very small amount of food in to her before school.  Some mornings we can not get Zoe to eat anything at all.  Zoe eats great at dinner time- she loves eating as a family.  We all finish sooner than Zoe but we stay at the table talking about our day and enjoying the together time.  So dinner is not a problem.  But Zoe only eating one good meal a day is a problem.

Why Does Weight Matter?

At this point, Zoe has used up all her fat stores.  She has grown in height and has grown even skinnier.  You can see every rib bone, hip bones, spine, etc on Zoe now.  Her legs have also gotten very thin and Zoe is not able to build any new muscle.  The fact that she is starting to lose weight tells us that she is out of fat stores and her body is going in to starvation mode.  Having fat in your body is also necessary for brain growth and function, good energy levels, healthy immune system, etc the list goes on.

So Why Isn't Zoe Gaining Weight?

We believe that Zoe uses an extraordinary amount of calories every day.  She is constantly moving, wiggling, playing, rolling, etc.  Even in her chair, Zoe is still waving her arms and legs around.  She loves to move!  In the past, Zoe was able to get enough calories in to grow at a nice slow- paced Zoe rate.  She has always been small, but she was always gaining on her own curve.  At this point, Zoe is not able to get enough calories in to support any growth and is now unable to even maintain her weight.

Options

We talked to Zoe about various options- she DID NOT like the idea of the teacher pulling Zoe aside in a quiet area to help her concentrate on eating.  She DID NOT like the idea of going back to forced oral feeding we had to do when she was a baby.  Zoe loves eating and wants to continue eating but she is older now and wants to eat when she wants.  And she is stronger now so forcing her is almost impossible!

When we discussed the G-tube option (a tube inserted into the abdomen that delivers nutrition directly to the stomach) with the team, Zoe became quite excited.  She likes the idea of us using the tube to feed her when she is tired or too busy (Zoe's words- apparently she is too busy at school to eat).  Zoe will continue to eat with her mouth, the tube will be there to supplement/ give her more calories.  Zoe already gets nursing at school so this will not be a problem.  Having the tube will make it easier when Zoe is sick or dehydrated- currently we have to insert the NG tube in Zoe's nose and she is not a fan of the procedure.  Zoe had always been good about leaving the tube in place when she was younger but this last time, in April, she kept pulling the tube out.  She does not want it there.  The G-tube can be tucked away and not bother her.

Swimming and Baths

One of our big concerns was that Zoe would not be allowed to swim or take baths- Zoe loves water.  However, the team said Zoe will get a simple g-tube that is allowed to go in water once it has healed. So we are all happy about that.

We meet with the surgeon next Friday to find out when the tube insertion will happen.  We are hoping in August- that way it does not interfere with our trip and Zoe does not need to miss any school.  Because Zoe has been losing weight, they may not be willing to wait that long.  We will see.

Ailsa

Jeez, this is already a long post but I wanted to put an update about Ailsa.  I made this a long post because feeding issues, tube feeding, weight, etc are such a problem for 1p36 children.  I wanted to explain why we are getting the tube now so other families looking for info have it.  We have many posts on tricks for oral feeding (I feel like we could give a seminar at the conference!) so if anyone needs any info- just ask.

Ailsa has finally been given a diagnosis.  She has a problem with her kidneys that does not seem to be genetic or have any reason for being there.  At this point, we need to monitor her and she is taking medication to stop further kidney damage.  We do not know how things will progress but we do know this is a lifelong diagnosis and she will need monitoring and medication the rest of her life.

IT SUCKS!

That is about all I can say about that.  I hate watching Ailsa get poked or taking her medication.  I hate that she already has some kidney damage and it can get worse...much worse.  I hate not being in control!  (Yes, I like to pretend I have some control over this crazy life of mine!)

Having said that, we know how lucky Ailsa and we are.  She is doing wonderful right now so we focus on that.  That is all any of us have- this moment.

Can you tell therapy is working :)

We hope you all have a great summer and we will post lots of pictures of our crazy adventures.  We are very excited about everything we have planned.  And we know everything always goes according to plan...

I love this picture of Ailsa giving her baby medication while I am giving Zoe her night meds.  Ailsa has a very strange idea about what is normal but that is true for any of us.  All we know is our normal.  And our normal is pretty awesome....most of the time.

Seizures in the Night

Zoe sleeping in our bed after a rough night.

Zoe has been sleeping much better for the past month or so. We think it is a combination of her seizures being under control, the melatonin we started giving her, and the strict behavioural approach we have continued with sleep habits. It has been great to put her to bed at 8pm and not have to get her again until the morning. There are many nights I can hear her rolling around but she is usually able to get herself back to sleep again. I can not even explain (unless you have lived through hearing your child scream for hours on end for months on end you may not fully understand) how wonderful this new sleeping pattern has been. We are all in a better mood from sleeping more. Zoe is back to laughing, playing, and loving school. She does not fall asleep at meals and she does not melt down in the evenings. Sleep is such a beautiful thing.

The last two nights Zoe has had a hard time due to seizures. She woke the other night and we heard her rolling around for a while and then she suddenly started screaming. As best we could figure out based on what Zoe was signing, she saw something that scared her and either her mouth was hurting (she grinds her teeth during seizures so this is possible) or she was afraid whatever she saw was hurting her mouth. Zoe is very sensitive about anyone or anything touching her mouth so we can see how this would scare her. Zoe was not able to calm down on her own so we took her into bed with us (as seen in the picture above). Last night Zoe again woke and while I was in changing her and getting her back to bed, she had a seizure and was very scared. After talking to her for a little while, Zoe was able to calm down and fell back to sleep in her own bed.

We are not sure why the seizures suddenly increased but she may have a touch of a cold or something brewing that is causing it. She seems to be sensitive to changes in her body like that. Zoe is able to sign that what she is seeing is in her head and she seems to understand this but is still scared by it. I can only imagine how scary hallucinations must be. Hopefully they will come under control again soon.

I Can Do it Myself!

Meal time has been messy with Zoe insisting on feeding herself. Her grasp has really improved so that we no longer have to hold her hand on the spoon. Instead we hold the end of the spoon to help guide it to Zoe's mouth. Zoe is doing a great job coordinating scooping and getting the spoon to her mouth while opening and then swallowing. She insists on feeding herself every meal now.
Sometimes we have to encourage Zoe to remember to slow down and swallow. Some meals she gets so silly she starts to laugh and everything just comes right back out. Certain foods are just too hilarious for her not to laugh at!

Zoe's Perfect Seat

Zoe has really enjoyed my growing belly. She finds it is perfect for sitting on and talking to me face to face. She also loves snuggling with me right now. I hope she is too distracted by the fun baby to play with to get upset when mommy's belly turns soft and is not such a fun seat.

Chewing Gloves

You can see in the picture above that Zoe is wearing soft splint gloves on her hands. These gloves are usually used to help encourage children to open their hands. Zoe does not need the gloves for this but her OT recommended them to keep her skin safe from her constant chewing. We have tried redirecting Zoe's chewing to specially designed chew toys or anything else she will put in her mouth. But at the end of the day, Zoe loves to chew on her hands. Instead of spending energy trying to break this habit and recognizing that Zoe would win that battle anyway, we have decided to look into keeping her skin intact. We tried bandages but Zoe quickly soaked these and then she had wet bandages sitting on her skin all day. Zoe does not typically break the skin when she is chewing but the constant moisture is breaking down the skin between her thumb and index finger. So these gloves are perfect since they are made of neoprene and dry quickly.

So far Zoe's left hand looks great and the right is improving slowly. We still tape socks on Zoe's hands at night to prevent her from chewing too much but she has become very clever at getting the socks off no matter how well we tape them. For those of you who have little ones who also love to chew- these are called benik splints and we have been happy with them so far. We are going to buy another pair so that when Zoe soaks the first pair (which happens by the afternoon) we can put a dry pair on. We really like the fact that they do not impair her using her fingers and hands. We do take them off for eating but that is because eating is such a messy time.

Spoke/ Blogged Too Soon

NG tube goes back in and Zoe is back in our bed.

After a whopping three days of feeling well, Zoe came down with a gastro infection. She couldn't keep anything down and was vomiting bile so back to the doctor's we went on Tuesday. The doctor gave us an anti-nausea medication that they give kids in the emergency room. It worked and Zoe only vomited once after starting the med. That night she drank the electrolyte solution pretty well (she was probably so thirsty after throwing up all day). Unfortunately, by yesterday afternoon she had not drunk or eaten much so she was getting seriously dehydrated again. She just didn't have the energy. Since Zoe never had a chance to gain back the weight or get well rehydrated after the last illness, she does not have any reserves. So we put the NG back in last night to give her the electrolyte solution. She is tolerating the feeds so far. We are trying to do everything we can to avoid going in to hospital where they would hydrate her via IV. Zoe is a really hard stick at the best of times but impossible when dehydrated. We have gone several times in the past for IV hydration only to find they can not get access to a vein. Or, after multiple sticks, they get the IV in but it lasts less than 24 hours. So, hopefully she will continue to tolerate NG feeds and will slowly increase her oral feeds again. Lyn (Zoe's respite worker) is coming over for a few hours today so I can get some sleep. Gavin is working a 12 hour shift at the hospital, so no rest for him! We hope (and maybe we will laugh at the naivety of this later) that Zoe perks up a bit today so we can bring her for a few hours of preschool tomorrow. I think it would be good for her to get out of the house a bit.

We are starting to feel a bit isolated and lonely here. Gavin pointed out that it has been weeks since we could do anything "normal" or fun with Zoe. We haven't even had time or energy (and she hasn't been up to it) to take a walk around the block or go on the swing in the back yard. We see other parents out our window bundling kids in their snowsuits and playing in their yards (we just got a little snow). It is difficult to explain the emotional impact of that on us at a time like this. It would probably be dramatic (although somewhat accurate) to say it breaks our hearts.

I had a small breakdown on Monday and Gavin had one on Tuesday.

But then we took a deep breath,

dried our tears,

told ourselves to suck it up,

rolled up our sleeves,

and said,

"All right, let's go again."

Bit of a Blah Day...

Zoe has been running a fever again since Saturday. Just a low grade one. So we are just waiting to see how she does. She did great eating and drinking Saturday but not so great the last two days. And so we are waiting to see how that goes too.

The feeding study is tomorrow and we are feeling a bit anxious about it. Since birth we have gotten pressured to put Zoe on a permanent feeding tube (G-tube). Some of the kids need this. But we have never felt that Zoe did/does. So it feels like this constant argument. We have agreed to the feeding study since she has had so many lung issues and we need to be sure she is not aspirating on her feeds. If anything, we think she is aspirating on reflux and this test won't tell us that anyway. And a g-tube won't stop her from aspirating on reflux. We know at least two 1P36 kids who have g-tubes and still have major lung issues.

Zoe is currently laughing like a maniac (she is supposed to be sleeping). So I am going to go eat my dessert and listen to my daughter laugh. She was determined to tell me something during dinner and it took us 15 minutes to figure out the exciting news was "Grandad gave me some milk today." She also wanted to swing on the swing outside after dinner with grandad. How could we say no when it took us so long to figure out her request? And so she got her swing in before bed.

On again, Off again...

Zoe in a great mood despite the tube.

Zoe back on tube feedings

It's been a busy week here. After three wonderful weeks of Zoe being well, she came down with another chest infection. She was choking a lot on her mucus and had a fever for six days straight. So after having to do the first step of CPR on her several times in one night, we decided it was time to take her back to the doctor's. The pediatrician prescribed an antibiotic to dry up the mucus. It began working right away but unfortunately zapped Zoe's appetite (which has happened before). We now have an emergency protocol to insert the NG tube at home after 12 hours of Zoe not peeing. And so, Sunday morning, while Gavin was in the middle of his third 12 hour shift in three days at the emergency room, I inserted an NG tube.

Zoe did great with the tube insertion. We have come up with a way of bundling her body and Riann (the respite worker) held her head. It was a rough week with Gavin working lots of hours (we are grateful for the hours/money but this week has been hard since it has been 18 days since the two of us has had a day off at the same time).

Thankfully, Gavin's dad Alan is here right now to help out. Zoe, as always has done amazing and maintained a great energy level throughout this latest illness. She even went to daycare for half of Thursday and all day today. In the past, we kept her out of school when she was on tube feedings. But given how great she was feeling, we didn't think it was fair to keep her home. Tonight we let Zoe take the tube out and hopefully she will eat and drink well this weekend.

Feeding Study Scheduled Tuesday

Zoe has a feeding study scheduled for this Tuesday. Due to her multiple lung infections and extra mucus in her lungs, the doctors want to make sure she is not aspirating on her food.

Zoe helping her grandad pull weeds outside.

Denny's = Eat

Zoe is Brilliant

After a very long day in the car, we were looking for somewhere to eat. I was in the back playing with Zoe (typically she is ok by herself but she was tired and hungry by this point). Gavin mentioned that he had seen a Denny's restaurant a while back but he didn't see anything in the next few miles. I noticed that when Gavin said "Denny's" Zoe turned her head and was listening intently. Gavin continued talking about finding somewhere to eat and again mentioned Denny's. Zoe immediately smiled and signed "eat." I continued to watch Zoe, and every time Gavin said "Denny's," Zoe immediately signed "eat." We thought this was hilarious. And what a great sign of her cognitive understanding. Perhaps it is Zoe's American genes coming out. And perhaps this is a sad commentary on how much we have been on the road recently. We also noticed that if we said "Denny's" or "eat," Zoe would go from excited about eating to devastated that we weren't eating right away in about ten minutes. And so we learned the power of spelling in front of our child. We even have to spell "D-e-n-n-y" since she knows that is equal to eat!

The Other Sign that My Child is a Genius

After eating half of my pot of mussels (yes, she ate an entire half!), Zoe continued to eat her food when a "Great Big Sea" song came on the radio. Zoe immediately started laughing and smiling like she does when she is listening to music now. The funny thing was that this was not even a song that we usually listen to. It was a song from an album we don't even own so she could not have heard it more than once or twice but she must have recognized the band. As soon as the song ended, Zoe immediately signed "more" and looked at me. I explained that I could not control what song is on the radio. She got a little upset with this answer but was distracted by the rest of her food so all ended well.

And the Sign that my Child is Amazing

We visited with my cousin Elena and her family on our way to and from Boston. Elena has a beautiful daughter Clover (I should post some pics of them playing together- it was very cute). Clover was kind enough to share her jolly jumper with Zoe. Zoe has not been in her jumper recently and we noticed something very interesting. She kept trying to walk in the jumper. Which means Zoe would bear full weight on her legs, hold her trunk up, and actually take a step or two by herself before collapsing in the support of the jumper. Sometimes she even managed a few steps before she reached the end of the slack on the jumper and got pulled back and would swing back and forth while laughing her head off.

We had a great time in Boston this past weekend. It is amazing how much more relaxing travelling is when Zoe is well. And it is amazing how much better I feel when I actually get a full night's sleep. Imagine that!

And We Aren't the Only Ones Who Think She is Cute

Check out Zoe on the Ryerson site http://www.ryerson.ca/ece/index.html I love her hair in this photo!

Update on Zoe's Lungs

Since a few people have asked (thank you for your thoughts) I just wanted to update everyone on what we were told about Zoe's lungs. When the doctors took a look at her older xrays (she had a few when she was first born and a few when she had pneumonia in Sept-Jan) it looks like Zoe's lungs have never really been "normal." She has always had a "haziness" in her lungs and they are not sure what exactly that is. At birth it was explained as due to her sucking in the amniotic fluid while in the uterus. When she had pneumonia it was explained as due to the infection. Now they are not sure if she has extra mucus causing the airways to get blocked which is why she has the atelectasis. Someone else mentioned bronchiectasis (http://en.wikipedia.org/wiki/Bronchiectasis) and this basically means that there is extra mucus plugging her airways. They don't know why there is this extra mucus. Their best guess is that she is either aspirating on her food or on her stomach acid when she gets reflux. So we are talking to the doctors about starting a reflux med. At the same time, we are waiting to hear about booking a feeding study as well as an upper GI test (http://www.medicinenet.com/upper_gi_series/article.htm).
Some of the other factors is that Zoe has an enlarged heart (she has always had this) and it is pushing on her left lower lung, making it difficult for the tissue to clear the secretions. Another factor is that Zoe had several chest infections this year, so that may be the cause of this extra mucus. We just have to wait and see if it clears up in time.
From what I know from other 1P36 parents, it sounds like many of our kids have these vague lung findings. So we do not expect to have an exact answer. It is a comfort in some ways to know other kids have been through this (for those of the kids that are doing well) but scary too (for those kids we know who aren't doing well).
I think I must be very tired (physically for sure but emotionally too right now) because it is almost like my brain is unwilling to process all of this until we know for sure what is going on. For now, Zoe looks great. Her lungs sound good (which gives me peace of mind) so we are hoping that she battled her last infection for this winter and we can move on and hope things clear up when she is well.
There are so many unknowns with Zoe that at times it can be overwhelming. The unknowns with her heart has caused us the greatest worry. Now we are a bit worried about the lungs (especially since it can put added pressure on her already stressed heart). But Zoe looks great. And we are planning a trip to Boston for work (we are told we can not fly right now but we were planning on driving anyway). So hopefully we will have a great trip next week.
The only other piece of advice we got was to carry our emergency plan, travel insurance, and NG supplies with us in case she gets sick. And from now on, we will be sure to watch her closely for signs of lung infection and bring her in right away.
So all in all- just another normal 1P36 day!

Zoe is turning orange

Zoe has really gone for the jarred baby food recently, which contain a lot of carrots (check the ingredients). We noticed her hands, face and feet turning orange and asked our pediatrician. Apparently this is called carotenemia (caused by excessive ingestion of carotenes, which are present in carrots, sweet potato and other green and leafy vegetables), is completely harmless and reverses when the carotene consumption declines. We used to make her all homemade baby foods, but awhile ago she decided she didn't like our as much and prefered the jarred stuff. So now her hands are orange, her feet are orange, her face is orange and her butt is orange (and, as we use cloth diapers, her diapers are orange). Not bright orange (except the diapers); just a nice healthy hue. It is more common in people of light skin tone, which Zoe certainly is. A few extra beta carotenes won't hurt her though. We thought of trying to change her diet, but really what is the point? As long she is healthy and enjoying her food we don't think this one is worth worrying about- we got enough going on as it is. So we just laugh and say that Zoe is going through her orange period, like Piccasso had his blue period. Zoe also had a grey period, when she was first born, and a blue period when she was showing a lot of cyanosis. Compared with these a little bit of orange is no problem.

Atel-ecta-what?

Zoe's Meeting with Complex Care Team

Zoe's pediatrician referred her to what is called the "complex care team." The goal of meeting with this team is to come up with a care plan for when Zoe is sick. That way if she goes to the emergency room, we already have a plan in place. And if she needs to be admitted, it will be the same group of doctors that will always be in charge of her care. That way they get to know her and provide more consistent care. Some of the other advantages are that if Zoe needs x-rays or tests at the hospital, we can get quicker results and the complex care team has six beds in the hospital so depending on if those beds are full, we may even be able to bypass the emergency room and get admitted right away. Because Zoe has been sick most of this winter, we thought it would be a good idea to meet with the team.

The meeting was what we expected but we did hear some things we did not want to hear.

Zoe's Lungs

For a while now, Zoe has been having some lung issues. Pneumonia that didn't clear up for months and now a junky sound and feel (you can actually feel the mucus if you hold her left side). Both the Nurse Practitioner (NP) and the doctor said what our pediatrician said- that this could be more of a chronic lung issue rather than a couple of different infections. We didn't really like this answer. They ordered a chest x-ray and the NP called last night to tell us the results.

Atelectasis and Aspiration

We were not surprised to hear that her lungs did not appear normal since she is sounding junky right now. We expected to hear that she had pneumonia again but instead we are told that the part of her left lower lobe that had pneumonia before now has atelectasis (http://en.wikipedia.org/wiki/Atelectasis) which the NP described as a "collapsing of the airways." Hmmm, that doesn't sound like a good time to me! So of course Gavin and I are now researching what this all means. The NP and doctor think that perhaps Zoe is aspirating on some of her food or her reflux and that is causing the lung issues. I asked what else it could be if it is not aspiration and was told, "I don't want to hypothesize on that just yet. Let's see what the test results show."

Of course through all of this, Zoe continues to look great and is quite happy. Her colour is great and she continues to have lots of energy. Today she is even at daycare with all her friends. We are so glad that Zoe is not suffering or uncomfortable but sometimes it is challenging to make our friends realize that Zoe is really sick. Yes, she looks great but her lungs look like crap!

Feeding Study

They want Zoe to get a feeding study (something that her pediatrician actually asked for 20 months ago but some how the paperwork got messed up and we ended up seeing nutrition instead). So we are waiting to hear from the hospital when they want us to come in for that. The initial feeding study will involve Zoe eating in front of an OT while she listens to her lungs with a stethoscope. If she hears anything or suspects aspiration, then she will order a feeding study with xrays.

Ending on a Positive Note

When we saw nutrition last week, they said they were quite impressed with how well Zoe eats. They are impressed with her variety in textures and tastes as well as how much she eats (she has turned into a real pig!) They also said that overall she is about the height and weight of a 14 month old (not bad since she is 26 months old). Her head is still quite small (about a 3 month old) but there isn't anything we can do about that. They also said that her body mass index is actually quite good as is her overall body fat. So we were happy to hear this. They don't want to see us for another year and said to "keep up the great work." It was nice to get the positive feedback after we have worked so hard the past 26 months to feed Zoe orally.

I would Pay a lot of Money for Sleep!

There are so many things that I want to post. So many cute videos and photographs. However, we have not had much time for posting. Zoe is having a very tough winter. There has only been a few weeks that she has not been ill.

I don't have the time or energy to write all the details but to sum it up, Zoe has a gastro infection again and we had to go to the Emergency room on Wednesday to have her levels checked. Most of her levels were fine. Some were a little funky but could be due to the fact that she has been puking and having diarrhea for six days. They attempted but could not get IV access to give her fluids so instead we went home. At that point she was drinking well.

Yesterday we felt that Zoe was getting worse and she was refusing to drink much at all. Her skin tone went from dusky to outright purple and her extremities were very cold. So we called her pediatrician who said we should return to the emergency room to get her re hydrated. Knowing that she is a hard stick, they would most likely insert an NG tube. Since we are comfortable inserting the NG and maintaining her at home we opted to stay home instead.

Last night we inserted the NG. Today we went to see the doctor. The great news is that Zoe has really perked up today. It is tough to gage how sick Zoe is since she is so easy going. After she got 12 hours of fluids into her I started to realize how dehydrated she had been. Now she is running around the house in her walker and just as happy as can be. Although she is pissed about the tube being there and keeps trying to yank it out.

I attempted to nap while she was napping but she woke up after 18 minutes. I offered her a million dollars if she would sleep some more but she was merciless and demanded that I get up to entertain her. I am so happy to see her perky again but I would pay someone some serious money if they would come over and let me have a nap! It is times like this that I wish our families weren't so far away and we could rely on them for some help.

I better go- bossy pants is telling me she is stuck in the corner and can't figure out how to back up. It is really great to see her feel better so quickly. We hope that by Sunday we will be able to pull the NG tube. Hopefully all goes well until then.

Happy Family Day at the Doctor's Office

So it's Family Day here in Canada and naturally we spent the day doing what we do a lot as a family- going to the doctor with Zoe! Zoe has a gastro infection and is getting dehydrated so we had to take her in. When the doctor weighed her, we discovered that she lost over a pound in the last three days. The doctor advised us to start syringe force feeding her and if she does not take in 24 ounces in the next 24 hours, we have to take her back tomorrow to discuss IV or NG tube hydration.

Arrrgghhhhhhh!

We just got the weight back on that she lost with the pneumonia! She is having a very tough winter. We are so sick and tired of worrying about weight loss and force feeding. Zoe, as always looks good though. Through all of this she is playing and mostly happy. The skin on her feet is beginning to wrinkle and turn dusky from lack of blood flow but if you looked at her, you would have no idea this is a kid who has lost 5% of her body weight and is dehydrated. She is amazing and so resilient. That is what we keep reminding ourselves. If we can just get through this winter perhaps the spring/summer season will be easier for her.

An Update on Equipment
We haven't had time to write with Zoe being sick but I wanted to give an update on the equipment. First, our friend Erin (whose daughter also has 1P36) gave us a seating system/special needs stroller. We are not sure if Zoe will need this but we took it to try it out. The place that has loaned us Zoe's corner chair for the last year needs to take the chair back. So we are going to see if the seating system is a good replacement for the chair. If not, we will look into purchasing a corner chair. Zoe has really gained in fine motor skills from having the support of the chair and we don't want to lose those gains.

Second, the pony walker and stander are scheduled to be dropped off tomorrow (if we are able to be here instead of the doctor's office) so we can check them out for the next week or so. If they work for Zoe, we will order them. It takes 6-8 weeks to get the government approval so they will pay 75%. Then we are hoping our personal insurance will cover the other 25%. We are frustrated that it will take several months to get the equipment that Zoe would benefit from now. But I guess that is the way the system works. We are supposed to think ahead by six months but how are we supposed to know what Zoe will need in six months? At this point I can barely think six hours ahead, let alone months!

Doctor's Visit and Cake Fun

Great News from the Doctor
We went in for a weight and lung check and found out that Zoe has gained back the weight she lost (and then some!) and is now 8.47kg (18lbs 10oz). And even better news- her lungs sounded "great" and "clear." So we are definitely celebrating tonight!

Great News from the Opthomologist on Monday
More great news to share- Zoe's opthomologist on Monday was very pleased with her vision development. He feels that her visual development is now on the same level as her overall development. So, she still has vision loss and her vision is still delayed for her age, but she is doing really well. She will continue to wear her glasses and do vision therapy. Both seem to be really helping.

Videos/Photos from Christmas
We are working on picking which photos and videos to post but in the mean time we wanted to share all the good news. We will be posting photos from Christmas soon. For now, here are some cute ones of her with cake.

Fun with Mommy's Birthday Cake
Last year, Zoe did not show much interest in her birthday cake. She was not self feeding at all and was not using her hands as much. Last week, Genevieve had her birthday and put her cake on Zoe's tray. Zoe immediately smashed her hands into the cake, then her face, and then threw it on the floor. We were so excited!!!! Here are some pictures of her enjoying the cake.

You can see that left hand is ready to drop the cake on the floor. She is eating with a whole lot of attitude these days....we love it!


Zoe still needs a little guidance in getting the food into her mouth but she is getting there.

That pesky pneumonia that just won't go away!

Lungs sounding better but still not clear.
We went back to the doctor's today for a lung and weight check. The doctor stated that Zoe's lungs are "a little better." I asked if Zoe still had pneumonia and she said, "definitely but the right lung is nice and clear now." So I guess that is something. I will be very happy once I hear that both lungs are clear, but at least she is improving slowly. As long as nothing changes, we don't have to go back to see her for one whole month! That will be the longest we have gone without seeing a doctor since September. So we will keep our fingers crossed, continue doing the respiratory therapy, and hope that we have a nice quiet holiday at home.

Weight Gain!
Zoe gained 180 grams (about 6 ounces) whoohooo! Her appetite has definitely increased and she is back to eating table food that is cut up in small pieces. We still give her pureed food at times when her mouth gets tired. We are really happy that she is not having the choking and coughing she has been having for the last few months with table food. It is great to continue forward with our eating goals. One of the reasons we go to this doctor even though she is now 45-60mins away since we moved is that she is great at seeing the whole picture with Zoe. She has always been supportive about us giving Zoe as normal a childhood as possible. Eating has taken a lot of work for all of us, but we feel strongly that oral eating is the best mode of eating for Zoe. I have to admit that the tube feedings Zoe was on a few weeks ago really made me realize how much easier that path would be for all of us. It was so easy to get the calories into Zoe. But the gtube comes with many problems. Some kids do need tube feedings, but we feel confident that Zoe does not need one at this time.

Fun News- Getting ready for Christmas.
Zoe chopped down her very first Christmas tree this past Saturday. Since she still has a nasty cough, we picked the first tree we saw, gave Zoe a quick turn at sawing, plopped her in a snow bank, and chopped it down as quickly as possible.
I am really glad we did not plan to travel this Christmas since we would have had to cancel our plans. We really look forward to grandma coming after Christmas to spend some time with us. I think she will be very surprised at how much Zoe has changed since she saw her in July. Her communication and social skills have really picked up recently.

Disappointing Doctor's Visit Today

Zoe cracking herself up in hospital. I love that smile!

Feeding Issues

We went back to the pediatrician today for her to listen to Zoe's lungs and assess the feeding issues. When we were discharged last Thursday, we went home with the NG feeding tube in place. Zoe pulled it out on Saturday so we decided to see how she would feed without the tube. Saturday and Sunday she did not eat as much as she usually does, but she did well enough to stay hydrated and keep her diapers wet. Today Zoe actually did awesome with feeding. So I am hoping that she will continue to eat lots and make up for the weight she lost. At the doctor's today, Zoe weighed 7.9kg (which is still .4 under what she weighed two weeks ago). Since Zoe is eating well today, we will continue without the tube and see how she does.

Lungs Sounding Worse

The biggest issue that the doctor was concerned about is that Zoe's lungs actually sound worse than they did last week. They sound "more wet, wheezy, and crackly." I can actually hear a bit of a wheeze/whistle when Zoe breathes. The doctor wants us to return to her office on Thursday so she can have another listen. In the mean time she is going to look into inhalers for Zoe. The issue with the inhalers is that they will speed up her heart rate since they are a steroid and the doctor is not sure if this will be too much for her heart. So if Zoe does need to start inhalers we may need to go back into the hospital to be monitored while the medication is started.

As you can imagine this was very frustrating. I was hoping to hear that Zoe was improving and we could take a break from so many doctor visits. Our doctor is usually very positive so it worries me to see her so concerned. The good news is that Zoe is doing well at the moment and is not in respiratory distress. We will just have to keep hoping that she will be able to get over this by herself without further medical intervention.

One last kicker- needing a special needs car seat

As if this wasn't a down enough visit, I asked about car seats and got an answer I was not expecting. For now, Zoe has been in the rear facing infant car seat that can accommodate a child up to 22 pounds. Zoe is not even 18 pounds so she still fits it. However, Zoe is getting so tall now that her head is starting to reach the top of the seat. I asked if we should start looking at getting a front facing car seat but the doctor is concerned that Zoe does not have the muscle tone to be front facing. In an accident, Zoe would not be able to protect herself during impact. So now we have to look into getting a rear facing seat that can accommodate a longer child. She recommended checking convertible car seats and see if she can fit into one of those. If not, we will have to look into and order a special needs car seat. We know a couple of 1P36 kids who use these. I was just disappointed to hear that Zoe is not ready yet to just move into the next step car seat. Oh well, some day right?

Summary of Hospital Visit

I am not going to detail everything here but basically we ended up in hospital because the first med did not get rid of her fever and the second med gave her horrible diarrhea with blood in it. Also, she started having a lot of pain with her NG tube feedings. The third med she was started on in hospital ended up giving her a terrible rash and she ended up thrashing about for over ten hours and that was with benedryl on board. Zoe tolerated the fourth med so we were released to continue the med and tube feedings at home. We are glad it was a short visit but it was not an easy one. Zoe had a lot of pain because of the diarrhea, rash, and possibly chest pain with the pneumonia. It was really hard to see her in so much pain and to have her sign "mom" or "dad" and look at us like we should fix it. But she is feeling much better now. She has big smiles and is very playful again. So hopefully we will figure out this whole lung thing and she will keep improving.

Improving Communication Skills

Throughout all of this, I have been very impressed by Zoe's communication skills. Her signing has gotten to the point where she was able to tell us that her stomach hurt her when she had the diarrhea. Also, yesterday she was signing that she wanted the tube put back in her nose because she was tired of eating with her mouth. It was great to see her figure out what the tube is for and that it is easier than eating with her mouth. However, we do not want to go down the permanent tube route so we are pushing her with her feeds again. It is really great to see that language comprehension and expression coming together for her.

Zoe temporarily on tube feedings again

Zoe looking a little shocked after getting the tube in. Even with a tube shoved in her nose she is gorgeous!

Showing off her arm boards that we taped in place so she can not pull the tube out when she is in her crib. Check out that double chin and those teeth!

Zoe at seven weeks just before we got rid of the feeding tube. I wish I could say getting rid of the tube solved all of her feeding issues, but as we have already talked about numerous times Zoe continues to have difficulty with oral feeding. We are just so happy that she is able to eat and drink enough to sustain herself when she is not sick.

Thank you to everyone for their thoughts, comments, and phone calls right now. We truly appreciate the support.

Update on Zoe:

We went back to the pediatrician's office yesterday (Friday) to see if the antibiotics were working. The good news is that the antibiotics do seem to be working. Zoe's fever is down and the doctor said that her lungs sounded better than they did on Monday. So, the issue now is that Zoe is still refusing to eat and drink and is getting dehydrated. She also lost a little over a pound in the last week. A pound for most of us would be no big deal, but if you only weigh 18 pounds, a pound is not a good thing to lose.

The doctor gave us two options. One was to force feed Zoe with a syringe. We did not think this was ideal for a few reasons. First, Zoe already has eating aversions and we already push her constantly with the eating. We were afraid to make this worse by force feeding her. Secondly, it takes us about 20 minutes to get half an ounce in Zoe with a syringe (we have tried this before). Obviously this is not enough fluids and therefore she would still be dehydrated. And thirdly, we were concerned that Zoe would start having negative associations with syringes. Zoe takes her heart med by syringe three times a day and at this point she is very cooperative with taking it. If we start force feeding her with syringes though, she may resist us giving her the med in the future.

The second option was to return to the emergency room and have them attempt IV access again. I asked if it would be possible to rehydrate her through an NG (nasal gastric tube that goes from her nose into her stomach) rather than an IV. The doctor said this would be a good option but we would still have to go to the hospital to get the tube placed. At that point I asked about a third option. Since we had two NG tubes left over from when Zoe was on tube feedings as an infant, I asked if we could insert the NG in the doctor's office and then take Zoe home. The doctor was concerned that we would not remember how to run the tube feedings. I explained that we were more than comfortable with tube feedings (both Gavin and I work in the hospital and see tube feedings all the time, Zoe was on tube feedings for seven weeks, and Gavin himself used to be on NG tube feedings). Also, if we did end up in hospital I was concerned that Zoe would not get as much rest, would be more resistant to eating, and might catch some other illness floating around. The doctor said she would have to talk to her colleagues and then would let me know.

When the doctor returned to the room, she said she felt Zoe being at home with the NG would be the best plan. We made a plan for if we run into trouble over the weekend. We have a walk in clinic we can go to and there is also the emergency room. I had brought the NG tubes with me in anticipation of what the doctor would say, so the nurse came in to insert the tube. The funny thing was the nurse hasn't done an NG in a long time so I had to show her how to measure, insert, and tape the tube. Zoe, as always, did so well. She was not happy about having the tube inserted and I wish I could have provided her more comfort instead of guiding the nurse in her job. It was actually good to see Zoe put up such a fight. She immediately pulled part of it out as soon as her hands were free. After I reinserted that part of the tube and retaped it, Zoe kept trying to blow it out her nose. Eventually, I got her settled and calm on my shoulder and she started giving me a sad look while signing "mom" and then touching her nose. It is like she was saying, "Mom, there is something in my nose. Fix it!"

So, after fighting so hard to avoid tube feedings, I found myself advocating for them. It was kind of weird. But I am really relieved that she has the tube in. Since it is temporary it does not carry the emotional stress that we had when Zoe was on tube feedings before. We KNOW that Zoe will be able to eat and drink again once she is feeling better. Zoe started having diarrhea today so it is a relief to know that we are able to keep her hydrated. She did start asking for food today but was not able to eat more than a few bites. She is still only drinking about an ounce of milk at a sitting. After eating for half an hour and not getting much down we decided to give her some milk through the NG. Zoe got upset when I took her out of her highchair and kept signing "eat." I explained to her that I didn't want her to waste all her energy eating and a half hour is plenty of time. It was great to see her feeling hunger. And her temperature is back to normal today. Both good signs.

Our plan is to mimic her normal eating times and amounts. We will give her half an hour to eat what she can and then we will top her up with extra pediasure mixed with milk in her tube. We have to put milk in the pediasure because we notice that straight pediasure gives her a lot of reflux. It is nice to be at home where we can control it and give her what we know she would typically eat and drink. At the hospital they would want her on a schedule and we would rather let her try eating on her own first. Hopefully this way we can avoid going to the hospital.
Our respite worker, Riann, has been helping us out through this. It has made such a difference to have some help. Gavin was unable to be at the doctor's on Friday so it was great to have someone there to help me. Also, Riann came over Friday morning so I could sleep in until 9 before getting up to go to the doctor's. It was great to be somewhat rested before dealing with the doctor visit. It is amazing how much more rational (and how much less of a b$%ch) I am when I get a little sleep!

Update on Other Doctor Appointments

As Gavin pointed out about my last post, I did not mention any updates about her ortho or other recent appointments.

Here are some updates:

Neurosurgery- We are holding off on getting an MRI until next year due to IV access. Because Zoe is such a hard stick, they may need to do a central line in order to give her the anesthesia. Last year, when Zoe had her MRI of her spine and brain, they were unable to get an IV in despite trying over 20 times. Zoe ended up looking like a pin cushion and they ended up doing the MRI without IV access which does pose some danger. So they decided it was not worth the risk of a central line to get the MRI this year since Zoe still has no symptoms of any spinal problems. The MRI last year did show a large syrinx (collection of fluid in the spinal column) so that is why we are keeping an eye on it. Zoe may need surgery in the future to drain the spine and put in a shunt.

Orthopaedics- Zoe's hips and feet are now considered "normal" from a bone perspective. Although Zoe is still tight in both the hips and feet, the doctor says she will not need surgery. So, we will keep doing the stretches and Zoe may need some braces for walking later in life. We will just have to wait and see.

Cardiology- Zoe's heart is still functioning at the same impaired level as last April. So we will continue with the heart med and see them again in six months. Good news is that it is not getting any worse. We wish it would get better but hey, we can't have everything!

ENT- Zoe continues to have very small ear canals but the doctor does not feel it is affecting her hearing. It is still difficult to fully assess Zoe's hearing so we return every few months to give the hearing test a try. So far we know for sure that there is a slight high frequency hearing loss of the right side. So that is not too bad. She is borderline for a hearing aide in that ear but since hearing aides cause a lot of feedback, it might be better for her to just get used to not hearing as well out of that one side. Since the loss it mild, it should not affect her acquisition of understanding and using language.

Zoe's Emergency Room Visit

After nine weeks of Zoe having a runny nose, coughing, not sleeping well, and seeing the pediatrician biweekly to check on her lungs, Zoe started running a high fever Sunday night. By Monday morning, Zoe was refusing to eat and insisted on being held constantly (not like Zoe at all). Her temperature was about 39.5 (that's 103.1 for the Americans reading the blog) and did not go down much with the advil and tylenol. So, back to the pediatrician's we went. The doctor guessed that Zoe either had a sinus infection or pneumonia. Her lungs were no longer clear sounding. She prescribed antibiotics and told us to follow up with her if she still had a fever in 48 hours. On Wednesday, Zoe still had a fever, still refused to eat, and was not acting like herself. It got a little complicated since we were at the hospital seeing orthopaedics and we did not want to have to go to the pediatrician's and then return to the hospital for a chest xray. So, we called the pediatrician and got them to fax through a requisition for the x-ray. That got a bit muddled because the secretary was too busy hanging stockings in the waiting room to bother checking the fax machine but luckily the orthopaedic doctor just added a chest x-ray to the requisition he made for her hip xray. In the end the pediatrician told us to go the emergency room where we found out that Zoe does have pneumonia in her left lower lobe. The best course of action would be IV antibiotics since Zoe was not responding to oral meds. However, Zoe is an extremely hard stick and they could not get in an IV. Rather than try a bunch of times and have the IV blow in the next day, they decided to give her IM (intra muscular) antibiotics, prescribe strong oral meds, and have us go back to the pediatrician's on Friday to have her lungs listened to again. They were able to get a blood culture so if the infection does not respond to the drugs they will know exactly what is growing in her lungs and the best meds to fight it.
Gavin took off of work today and I will take off tomorrow. We were relieved that her fever seemed to be going away but by this afternoon she was running a fever again. We do not want to go back to the hospital for IV meds since this would mean Zoe would require a central line in order to get the meds since she is such a hard stick. Since we know other 1P36 kids who have constant lung infections we are holding our breath and hoping that this is not the start of a bunch of infections. The doctor in the emergency room brought up the fact that the pneumonia could be partly caused by or made worse by Zoe's choking on her food. Zoe could be aspirating her food into her lungs. Since Zoe has never had pneumonia before, this is unlikely. However, if Zoe continues to get infections then we will look into this.
It is heart breaking hearing Zoe cough and I can't stand forcing the meds into her mouth. She has gotten very clever and has figured out how to throw up right after you give the med so we have figured out ways to distract her.
Going through all of this has made me appreciate a few things in my life. Number one is how amazing Zoe truly is. She must be in so much pain right now but she is still such a trooper. She was upset with the IV and blood draw attempts but she did so well with it all. On the way home (we ended up having to take the subway and bus home at midnight and we laughed since it was in middle of a snowstorm- I am not sure the doctors would approve of it but we had no choice since we did not have her car seat at the hospital to take a taxi home) Zoe just played quietly and fell asleep. She really is such an easygoing child. We worry that doctors overlook her pain since she does seem to have such a high pain threshold. But since we know her so well, we can advocate for her when know she is not herself.
One of the other things it made me appreciate was Zoe's communication skills. This was the first time that Zoe was in distress and could sign what she wanted/needed. She kept signing "mommy more" or "daddy more" when she wanted us to just snuggle her. She also signs a very firm "no" and "all done" when we try to feed her right now. It is so much easier now that she can tell us what she wants. We can see how much less frustrated she gets since she can communicate her needs.
Another thing I appreciated last night (and always appreciate) is the great partnership I have with Gavin. He and I were always on the same page. We advocate for Zoe in the same way and we both feel comfortable and confident in questioning the doctors. Having children puts a strain on any relationship. Having a child with special needs puts even more strain because you are more sleep deprived, worried about different things, and for us there is a huge loss in income since we are unable to work full time. On average, it takes about 20 hours a week to coordinate Zoe's appointments and take her to the doctors. That does not include the extra time it takes to feed her or do her therapy. And that does not include when she is sick and it takes much longer. 20 hours is a part time job! No wonder we hardly ever have time to spend alone as a couple! Even though Gavin and I are exhausted right now and very worried about Zoe, we are always still on the same page. I just can't imagine if I didn't have someone by my side going through all of this.
Anyway, I have to take Zoe back to the doctor tomorrow and hopefully all is well. As soon as this cough clears, I look forward to getting some sleep. It is incredibly hard to sleep when your child is struggling to breathe. Since Zoe does not have the muscle tone of a typical 21 month old, she is not able to have productive coughs which makes it harder for her to clear her throat and initiate breathing after a coughing fit.
I hope she gets her appetite back soon. Last time she was measured she had gained 6 ounces in the past three months. Not bad since she has been sick for the past two months. More importantly, we have to be sure she is staying hydrated.