99 bottles of milk on the wall...

We just got home yesterday from a great road trip to my Dad and step mom's house.  

My Dad retired a few years ago and they built a beautiful home on the water. It's about 3 hours away from Ottawa by car and Katie was an angel during the drive. I wasn't sure how it was going to go...she was really small on our last road trip. Chris set her up with old Sesame Street skits on a mini laptop. Needless to say, she was very pleased. Her eyes lit up when we turned it on and all she could do was look at me, point to the screen, "yes, honey, it's Elmo"...look at me, point to the screen. This went on for a long time!

I didn't get a photo of everyone together (or everyone, period) this weekend. So here are some random pics...

Katie in the car.  

Looking pretty mad at Elmo. Or her foot. 

I know that a lot of you have a built-in DVD player in your car, but we didn't think of it when we bought our SUV. Chris offered to post instructions on how to capture YouTube videos and set-up your laptop with a player if anyone wants to do so. 

This is the view from their deck. Gorgeous!   

They moved here from smack in the middle of downtown Toronto. What a change.

I tied a scarf around Katie and Chris...they didn't like it. 

Friends Todd, Judy and their son Cordell came for a couple of days as well. We had a blast.  Only managed to get a photo of Judy.

Joan, a neighbour and friend.  

She made Katie a really beautiful quilt when she was just a tiny baby. She came over for a quick visit. Katie is obsessed with her ears.  It's hard to get a shot without her finger in them.  lol

My Dad and Katie playing on the floor.  Me in the back...looking stoned.  

Chris' Dad and step mom only live about 45 minutes from my Dad, so we were able to stop in for a nice (and food filled) visit to their restaurant. They're both amazing chefs and I always eat way too much when we visit. 

Chris' step mom, Chang,  feeding Katie.  She loved it!  Vermicelli with ham, corn and snow peas.  Yum!

I'm sick today with some stomach/head cold. Yuck!  I'm trying to keep my distance from Katie so she doesn't end up with it as well.  I can't wait for summer...I NEVER get sick in the summer. 

Keeping a straight face

Katie can never be accused of being bland.  

She's hillarious. These are just some of her favorite expressions in any given 5 minutes. 

Note the last photo.  Yes, her new favorite hobby...sticking her finger and anything else close by up her nose!  Grace.

The Giggles

Almost every night when Katie starts 

to get tired, she gets the giggles.  

Smile!

Katie’s Story Part 7!

Milk | diabetes | blood clots | tubes tubes tubes

So, at this point in Katie’s story, she had been on a regular floor for about 1 week. She was starting to open her eyes more, look around a tiny bit and had even taken 15 cc’s of breastmilk from a bottle once.

15 cc’s that took 3 pumping sessions to make! For all those moms who think they have a low supply of milk…try adding copious amounts of stress and then see what happens.

When Katie got sick I had finally just figured out breastfeeding and pumping. THEN it all disappeared! Stress, apparently, kills milk production. So does not sleeping, not eating and generally not taking care of yourself. All of the odds were against me. I was gulping down Ensure shakes to eat fast and getting about 3 hours of sleep as night.

I ended up pumping every day and night for 5 weeks hoping that once Katie was better I could start feeding her again. It wasn’t easy and it wasn’t fun. I would get 5 to 10 cc’s each time. For those who don’t cook…that’s about a teaspoon. YEAH…NOT much!

I would go up to the nurses counter, pick-up a pumping kit and head over to the pumping room closet for 20 minutes. Then I would collect every little drop in the hospital bottles and give it to the nurse at the desk to store for us. Sometimes we would put it into her feeding tube, but I got discouraged and asked them to save it up until there was enough for a few good bottle feedings. (this was when I still thought she’d hop right back on the bottle once she was better)

Like I mentioned, Katie had taken one very small bottle from a great OT and she was going to try a few times a day to see how Katie would do. The head OT (we’ll call her Attila to make it easier), the one that Kate wouldn’t eat for and the one that we didn’t much like, came in just to tell us that even though she took some milk, it didn’t mean anything. Yeah, thanks lady! She said that we (Chris and I) shouldn’t give her any bottles ourselves, only the OT’s should be feeding her...not even the nurses.

Did I mention just how much I really, REALLY dislike Attila. Just thinking back to this makes me want to march back into the hospital and tell her how discouraging and unhelpful she was in the whole process. I really would do it if I thought she would change anything about her “ways”, but I don’t think she would.

We waited for the OTs to come and sometimes they would and sometimes they wouldn’t. They were pretty busy and it was fairly disorganized. On the second day of this, Chris decided that Katie had been forgotten enough and asked the nurse to hand Katie to him in a chair and I went to pick up a few of my “teeny tiny bottles of milk”. I was a bit nervous because of what Attila had said, but was also frustrated with the lack of diligence. Katie ate 45 cc’s right away...no problem! We were jumping up and down!

We kept feeding her ourselves for a day or two, before Attila reared her face again. I can’t even remember what she said. I completely turned out and then told her that we WOULD continue feeding her EVERY time the OTs didn’t come. And feed we did! Our nurses started to get in on the action and asked if they could feed her during the night when we went to get a few hours of sleep. It was great.

We had one nurse, Wendy, who called herself "the feeding whisperer" who wanted to try. At this point I’m pretty sure they had a bet going to see who could get Katie to eat the most. She got Katie up to 3-4 ounces!! That’s 90 – 120 cc’s!! This was over a couple of weeks and it just got better from there (until reflux kicked in and Katie started HATING her bottles, then went on a COMPLETE bottle strike...but that comes much later in the story).

Katie was to stay in the hospital for another month or so to get her full dose of mega-antibiotics. Even though nothing “grew out” from her last lumbar puncture, the standard course for Meningitis is 4-6 weeks

We managed to get her into a bit of a daily routine. She’d wake up at about 7:00am. We would hold her, rock her and talk to her for hours every day. We had a great group of family and friends who would come daily to take turns spending time with her. She was NEVER alone.

They would take blood from her Broviac line every day and runs labs. This was the line that was surgically placed into her chest. It ran through her skin and into an artery by her heart. YES it was scary. I was paranoid that it would get caught on something and get yanked out. Yikes!

We had a few scares with Diabetes Insipidus. The doctors thought she developed it 3 times, but it worked itself out each time. Apparently when there is damage to the brain it can “forget” how to manage vasopressin.

- Diabetes insipidus is a condition characterized by large amounts of severely diluted urine, with reduction of fluid intake having no effect on the latter. The most common type is central diabetes insipidus, caused by a deficiency of vasopressin, also known as antidiuretic hormone (ADH).

-

Then, during an ultrasound, they found a blood clot in her jugular vein, care of an old central line in the PICU. This was potentially very dangerous as it could break loose and travel to her brain causing another/more strokes. They had to start giving her 2 injections a day of heparin (a blood thinner). It had to be injected and couldn’t be given via her Broviac. We had to wait for her body to create a “wall” covering the blood clot and then build new collateral veins so that blood would still flow through her jugular...just on a new path.

They watched the clot and measured the amount of heparin (this is the drug that almost killed Denis Quaid's twins a few months ago, in case you haven't watched the news lately)in her bloodstream carefully. We found out that many babies need up to 6 months of injection before it was safe to stop. I was praying that we would not have to give her shots at home.

Katie also still had her feeding tube. Even though she was taking bottles, she wasn’t taking enough to sustain her. So she had an NG tube which went up her nose and down to her stomach. We learned how to set-up the pumps and equipment, run her feds and sterilize it all afterwards.

I never thought I’d be doing this sort of thing for my baby. It was easy to learn but HARD to take emotionally. Tubes, clamps, beeping pumps, injecting air into her little belly every time to check for tube placement...I found it all scary, sad and depressing. And it was another line that could get caught and yanked out. We had to be so careful moving her and holding her with all of the tubes, lines and monitor wires.

Everything went fairly smoothly for about 2 weeks. Katie continued to look around more and more. She started to show her personality, which was SO nice to see. We only had 18 days at home with her before she got sick, so we missed A LOT of bonding time. She began to coo and squeak. We pretty much spent the whole day looking at her and smiling.

AND THEN, just as we were starting to get used to things...

I heard the word discharge. She still had and needed the feeding tube, Broviac and twice daily injections...I started to FREAK OUT! Now I know differently, but back then I had NO IDEA that they sent babies home with tubes up their noses to eat and requiring shots every day.

I just thought we’d stay in the hospital until she didn’t need them anymore. I was blissfully naive back then. :)

Part 8 - Going home with tubes and needles...yup, that’s how it went, coming soon!

SOONER than this one, I promise.

Getting a sponge bath.

A family photo.

Katie cuddling with her Popi. Wow, we look SO tired. Can you SEE me...sorry for the close up!

The coos and squeaks.

A good friend of ours who is now Uncle Omid.

He spent a lot of time with Katie. So cute!

Water baby!

Water is funny from Chris Lee on Vimeo.

It's a real pain. In the....teeth.

Poor Katie seems very close to cutting her first molar. I know that every baby goes through this, but I hate seeing her in any pain after all she's been through.  

We actually went to our Pediatrician's after hours clinic the other night, sure it was an ear infection. She cries and grabs her ears when it hurts and then lays her cheek on our hand/face/leg to try and tell us it hurts. Poor thing. 

So far we've given her Tylenol twice, but I think I'm going to give her Motrin the next time. I was trying to avoid Ibuprofen because it's so hard on the stomach and we're in the process of weaning her Reflux meds. I've also tried giving her cold soft teethers and ice cream, but I think she wasn't liking the cold too much. 

Do any of you moms out there, who have already done this, have any suggestions that worked for you?  

Expelled from class!

I'm VERY happy to say that Katie has been kicked out of feeding therapy!!   

She still thinks that eating is a waste of time and would rather do anything else. BUT she is gaining weight and eating enough to keep the OT's happy. She is still sticking to her 1-2 Avocados a day routine, which is fine...she could do a lot worse on her choice of favorite food.  

Did you know that Avocados have between 400 and 700 calories each depending on their size? Needless to say, I'M OFF them forever!  

One Avocado=60 minute jog

One Kitkat=15 minute jog

Miracle Monday: Gwendolyn Strong

As you may know, a lot of bloggers use themed posts for certain days of the week...Not me Monday, etc.  Never one to follow the pack, I thought we would do it a different way around here.  

When Katie was 3 months old and we were settled back at home, I started connecting with families online who had gone through a similar battle with Meningitis.  I can't tell you how much this helped me cope.  

I thought I'd do a post on one of these families each week and call it "Miracle Monday".  I know how much it means to have people reading about your little one and it's very uplifting to receive encouraging comments.  

Now, I follow about 20 kids and their families.  Their illness range from Meningitis, Cancer, CHARGE and now....SMA (Spinal Muscular Atrophy).  

Miracle Gwendolyn Strong

I came across Gwendolyn's site through another family with a sick munchie and fell in love with her! She is such a little fighter and her parents, Victoria and Bill are pretty impressive people. Their gorgeous little girl has SMA. 

I had never heard of it before, so here are some sad facts about this awful disease...

• SMA is the leading genetic killer of infants. 
  
• It is a terminal, genetic disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. 
  
• SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow. 
  
• The mind and spirit are no different from that of a healthy baby, but the body eventually fails. 
  
• Typical babies with SMA Type 1 have a life expectancy of between one and two years and they require around-the-clock medical assistance and monitoring.

Victoria and Bill have been working tirelessly to have a bill passed to cure SMA...and it's not that far away from happening. 

You can help...if you're in the US (like a lot of our readers). 

Here's what Victoria had to say...

"I think, perhaps, I am obsessed. No, I know I am. Each day I check the petition, multiple times a day actually. I read the comments people write and the places they are from. I look for patterns to see what outreach efforts have worked. I think about how to reach more people, how to gain more support, what to try next...every single day. Perhaps it seems futile, perhaps pathetic. But to be told, "There is nothing you can do. Go home and love your baby" -- well, that is impossible. We have no course of action, no next step, no treatment to put all of our efforts and energy into. 

The petition is our rounds one, two, and three. In a sense, the petition has become a 'treatment' because seeing it grow gives me hope, encouragement, and renewed vigor to keep pushing and fighting for our daughter, for others fighting with SMA, and for all of those taken much too early by this horrible disease. 

I know that to most people it is just a petition, a piece of paper. But not to me. It is all I have. It is my hope. My way of fighting this cruel disease. My way of doing something... anything... instead of just sitting there and waiting. 

I'm on the lookout for miracles, but none seem headed in our direction, so this is all I've got.And so, when you pass out fliers... when you post on your blog... when you tell a friend... You are helping. 

You are helping one mother feel as if I am not alone, as if I have not given up. And I thank you for that, for giving me a little bit of hope...I need it to be a better mother to Gwendolyn."

SO GO SIGN the petition to cure SMA. It only takes 30 seconds. 

Click here to sign the petition!

Give a voice to these little one's who can't do it themselves!

Thanks everyone!!

GREAT Neurology appointment!

I meant to update on Katie's appointment last night, but it got away from me. It was fantastic!!

When we arrived we saw the prettiest little girl in the waiting area and she spent 10 minutes waving and smiling at Katie. Katie LOVES little girls. AND she loved the attention, hamming it up for everyone is the waiting room. Waving, yelling, Dadadada, making crazy faces and (a new one) sucking on her finger and then sticking it in her ear, repeatedly, whilst looking around for a reaction with a little grin. Otherwise it was all grace, dignity and poise. Ahem. 

A Resident came in before Dr. H to do a quick assessment. She had been on duty a few times while Katie was in the hospital. She was completely shocked when she walked in and told me she was "floored and didn't know what to say" when I put Katie down and she wandered around, holding the low bed in the exam room. I LOVE seeing the shock turn into big smiles on the doctors faces when they see Katie.

Dr. H told me that "Katie couldn't possibly be doing ANY better than she is right now".She is still within all "normal" developmental windows. He said, "I can't explain it" and "We didn't expect anything close to this", a few times.  

He told me to keep doing whatever we're doing, because it is WORKING! I'm so proud of Katie. I sat there talking through a huge smile the entire time. Dr. H left telling Katie that she aways makes his day! I imagine that his days are pretty tough. :(

We have a few new pieces of information and things to "watch for"...there are always things to "watch for" in Neurology, unfortunately.  

He told me that if Katie makes it to 2 years old without having another seizure the chances of her having a serious seizure disorder are very slim. She will still be at a high risk for seizures after 2 years, but it would likely be a treatable, more easily controlled version.

FOURTEEN months...10 more to go! We're more than halfway there. Wonder what I'll be praying about? 

He also told us that her legs are very flexible. He'd consider it genetic if Chris or I were the same way...but we've done Bikram yoga and OUCH, no, it's definitely not the genes. So, it is likely from the injury. He said that it wouldn't really effect anything other than a slight delay in walking, running, etc. Not a big deal. After seeing her cruise, he's 100% sure she'll walk and thinks it will be 1-2 months from now. Hurray!!! 

 

The next thing to "watch for" and probably his biggest concern is language and communication. Communication takes place using 3 different part of the brain. There are so many things that our brains have to do to communicate. We have to learn letters, words and their meanings...store them somewhere...retrieve them quickly and translate them into a physical form, by writing. Some of the worst bleeding was in these areas.

Babies "normally" know a minimum of 6 words by 18 months. Then at about 20 months they have an "explosion" of new words.  

I figure Katie already has 3 down (Mama, Dada and Nana) and has 4 months to learn 3 more! I have no doubt that she will be able to communicate. It might be a bit different than you or me, but she will.  I'm still very hopeful that this will be yet another miracle and she will be able to speak, read and write "normally".  

Needless to say....WE ARE SO HAPPY! Wow, to think where we were even 3 months ago, wondering if Katie will crawl and walk. Not to mention, 11 months ago when we didn't know if she would see or hear. She is truly a walking (well, almost) miracle.  

Thank you again for following Katie and for your prayers! 

Katie's Story Part 7 is coming soon.

Here are some photos from today...

Playing with hew new bee.

One of the "faces"...TOO cute.  And some bad bed head!

Hugging her little bunny.