Thanksgiving

We hosted our first ever family Thanksgiving at our house this year.  This is the first round of holidays since my Grandmother passed away so some of the usual traditions have been changed up a bit.  We all miss Grandmother and love looking back on the memories of our former traditions, but are enjoying some of the freedom to make some new traditions too.

So, this year, since we have the most space, most kids, and newest family member, it was decided that it would actually be easiest on us if everyone came to our house.  And come they did!  All members of the Tilton crew joined us as well as Mike's Dad and sister--we had 11 total.  We missed his brother and their crew (they traveled to CO to see Dayna's family) but we'll be together with them for Christmas.

We loved having everyone and though the kitchen was a bit crowded at times, it was actually a very low stress day and we were sat down to eat by 1230!  (The past tradition at my great aunts was usually a goal to eat around 1pm which meant we would eat around 2pm).  Everyone helped and contributed--it was almost a pot luck style feast with various family members being responsible for different dishes for the meal. 

The only downside to the whole weeked was our sick kiddos.  Noah had a fever that lasted from the Saturday before Thanksgiving to Wednesday of that week.  According to the doctor it was only a cold.  Negative for flu and strep--good news, it's not flu or strep.  Bad news--you just have to wait it out.  So 5 days of fever plus some residual coughing and overall not feeling well.  Not much fun.  He bounced back just in time to enjoy some family time but I think by then had already passed it to Emily.  In the weeks prior, we were beginning to notice some improvements in her sleeping--more consolidated and patterned with good naps.  But Thanksgiving week she had no schedule at all, wouldn't sleep much unless held and really didn't want much to do with people other than me and Mike.  She did enjoy some play time with the rest of the family, but not like I'd expected her to.  I thought it was possible she had a touch of what Noah had and sure enough she came down with her own nasty cough and runny nose on the Sunday after Thanksgiving.  No fever but she litterally slept ALL day that day.  I was a bit worried she might get dehydrated becuase she wasn't eating much but I just kept offerring all day long and little bits here and there proved to be enough.  Thankfully within a few days she was all better!

Dinner time Wed night.  Love seeing Mike at the "kids" table

A little Wii time with Uncle Thomas

Thanksgiving crafts with Aunt Kristi

"I love this cool sleeping bag!"

Noah got to have a "sleepover" in our room since his room and the futon were used for guests.  He loved it.

Emily's first Thanksgiving "I'm Stuffed"

Playtime with Daddy

Hanging with Aunt 'Nessa. I love their shared expressions!

Smilin' with Grandma

LOVE this cute tu-tu dress!  Little girl clothes are so FUN!

Yummy Tulle!

Kristi and I spent Friday morning in the kitchen doing a batch of homemade cinnamon rolls.  YUMMY!

Thanks, Sister, for the extra set of hands!

Laughing with Aunt Kristi

(making up for all the screaming she did with Aunt Kristi too!)

We have MANY things to be thanful for.  The beautiful, smiling faces of our two healthy children along with all of our other family members are at the top of the list.  We thank God for his love and for all the blessings He so lavishly bestows on us!

Emily 4 Months

4 month stats:

Weight: 14 lb 10 oz (75th percentile)

Lenght: 24.8 in (75th percentile)

Likes: Eating, sleeping, pooping (yep, still favorites!).  Playtime with Mommy, Daddy, and Noah-especially "talking" with us.  She loves to watch and study our faces.  Activity mat and toys-especially this red monkey toy that vibrates when you pull it's string. Sitting in the bumbo.

Dislikes: Sleeping alone, being left alone for too long

Attempting to capture Emily's 4 month photo is a great summation of this past month.  Hands in the mouth, constantly looking around and moving, more hands in the mouth...

This last month Emily really had a spike in her development.  Lots of great milestones this month.  She holds her head up well on her tummy; she is reaching and grabbing for things though in a pretty uncoordinated way; she loves to suck on her hands and puts them in her mouth often; she is vocalizing more and more and is even giving us little giggles!  She's very interested in things around her--watching us, turning to sound (this is SO great to see--she was even doing this before we got her hearing aids), looking at and trying to play with her toys. Lots more fun these days!

On 11/19 just a few days before she was officially 4 months old, she rolled over from her tummy to her back for the first time!  She rolled to the left side first.  We were super excited and gave her lots of praise.  Then quickly put her back on her tummy to see if she could do it again.  Sure enough she rolled over right away, but this time to the right. 

I cannot say enough how much I love love love watching her hit these milestones.  Even though they seem small, for a baby with special needs, hitting the milestones is HUGE!  There is no test for development.  It's just a wait and see thing to see how she grows and develops over time.  So each milestone lets us know that she's on track and is another positive to add to the list of reassuring signs that Emily's only challenge is her hearing loss.

Some other highlights from this past month:

--She got her first set of hearing aids. We also got lots of good news from all the testing that was done last month (see previous posts for details)

--We're working on better sleep at night.  Right now this means she is sleep in bed with Mike or me most of the night but for now at least that means we're sleeping and only up to eat once per night

--Emily and Noah both got to spend extra time with Granddad.  My Dad came up and helped out for a week while our normal day care provider was closed.  My Dad is a rockstar!

This last month has given us glimpses into the coming fun.  Emily is getting more and more interactive and really enjoys our company more and more.  This makes life with her much more enjoyable.  She's still not very scheduled with her sleep/eat patterns and that's something we need to work on.  Some days are great.  Others are very unpredictable.  But in general, it seems each month has been a little better than the previous.  We're excited to see how she continues to grow.

Emily Update

When I posted Emily's 3 month update, I mentioned that we'd been to see an Infectious Disease specialist becuase Emily had tested positive for CMV.  As of Monday, we finally have all the results back from the various tests that were done and all gave us good news!

3 weeks ago Emily had blood drawn and ultrasounds done.  She did great and was such a trooper for all of the testing.  The ultrasounds were to look at her kidneys (since the kidneys develop at the same time as the ears in utero, we wanted to rule out any renal abnormalies since we know she has ear problems) and her brain (looking for calcifications as evidence of the CMV virus affecting her brain).  Both ultrasounds were normal!!  Praise the LORD!  It was a very odd thing sitting there and seeing our child's brain on the ultrsound screen.  There's something about knowing that was her brain.  Her brain!  Wow!  It leaves you sitting on pins and needles wanting to know right away if things are alright.  It's amazing what technology can do.  I had no idea you could visualize the brain with ultrasound but this works in babies because their fontanelle is still open so this makes it possible to transmit the waves is there is a natural opening to the brain(doesn't work once the fontanelles close).  During both ultrasounds she just lay on the table smiling and making faces at me and cooing to me.  She wasn't bothered by it one bit!

She did well with the blood draw too.  We were very thankful for a patient tech that took his time to identify the very best vein in order to only have to poke Emily once.  It made her mad, but he got it on the first try so the painful part was over with pretty quickly.  She cried for just a few minutes after I picked her up and then promptly fell asleep on my shoulder. 

The blood tests looked at her platelet and liver enzymes (platelet destruction and liver damage can be caused by CMV).  We also did a genetic screen (added on just to give us extra information due to her hearing loss).  These tests were also all normal.  The final blood test was a quantative test to look for CMV DNA, basically looking for evidence of the virus in her body and trying to determine the amount that is there.  This test came back negative.  So, what does that mean?

This is the best understanding we, and the doctors, have of what's going on with Emily: It is most likely that she was infected with CMV (cytomegalovirus) while I was pregnant with her. This is why her urine tested postive for CMV back in early Oct. This is the most likely cause of her hearing loss (since genetics showed nothing). Since the initial CMV test was done when she was 2.5 months old instead of 2-3 weeks old, we'll never know for sure as the only diagnostic test for CMV must be done in the first 2-3 weeks of life. When she was tested 3 weeks after that intial postive urine test for CMV, her blood test showed no detectable viral load for CMV (this is the negative test mentioned above). The best guess at what this means is that she did have more active virus in her body in early Oct. In the 3 weeks that passed between tests, her immune system was operating as it should and helped to fight off some of the virus. CMV is one of those viruses that never is fully cleared from the body. So, she still has it (as do any of us that have ever been infected), just not at a level that is detectable by the lab tests. This is good news because it means that it (hopefully) can do no further damage to her body.

We'll be continuing to monitor her hearing for progressive loss (which we would do anyway) and she needs to go to the pediatrician at the first sign of fever (just to make sure CMV isn't active and causing problems in her body) but for the most part, she should be fine. Most healthy children have no further complications with a "silent" infection (meaning they were born with the virus but it didn't cause major systemic issues in the body). Should she become immunosupressed for some reason down the road (ex: with chemotherapy or cancer or some other major illness) then she would be at increased risk for reactivation of the virus and further secondary complications. This is rare and hopefully we never have to go down that road.

There are some treatments available for congenital CMV but are not typically indicated in a silent infection with hearing loss like Emily has. We explored the pro's and con's of this with her Infectious Disease doctor. Risks would be immunosupporession and hepatitis while on the medication which would require frequent (at least monthly) blood tests and she would be on the medication for 1-2 years. Since research has not shown any benefit with this treatment we decided it is best not to explore this any further.

After reading up on Congenital CMV and the spectrum of problems it can cause in children (small head size, growth problems, liver damage, decreased platelet count=bleeding, mental retardation, hearing loss, vision problems, etc.) we are actually very thankful that all we seem to be dealing with is a very mild hearing loss. I actually saw a patient with this when I worked at the clinic and that baby was very sick. Emily is NOT sick. She is growing and thriving and beautiful! She is reaching her developmental milestones. Only time will tell us for sure if she will have any cognitive issues/delays but for now we are very reassurred with her normal brain ultrasound--this is a good sign! We do still need to visit the pedi opthamologist soon to get her eyes cleared and hopefully that will be the final check with specialists other than following her hearing and normal visits with the pediatrician.

It's been an interesting (and at times confusing) ride so far and I've actually learned a lot--even as a pediatric nurse there have been many new things for me as we've gone through this process.  We're just thankful for a happy, healthy baby with a very treatable and managable problem though I am also thankful that we are (hopefully!) done with all these extra tests and appointments for now.  Thanks for your continued prayers for our little girl!

Yay for Hearing Aids!

Emily got her first set of hearing aids on Monday! These are "loaners" through the Regional Day School for the Deaf Program--this is the auditory specialist that comes to our house weekly as part of the Early Childhood Intervention program. We get to use the loaners until we are able to get our own for her. Apparently, there are very few places in the community that are willing to fit infants which can make it a long process to get our own. Since these are free and we have access to them through the program until she is 3 years old we are very happy to use theirs until she gets a little older. They are new and the same quality we would get if we went out and got our own so really this is a great service that is available to us!

We haven't been able to tell a huge difference in her responses since she's had them. Today is the first day she's had them on all day. She was already turning to sound, vocalizing, and responding when we talk to her and she's continued to do those things. It does seem she may react a bit more to sounds than she did before but time and more use will give us a better idea of how she's responding to them. They don't seem to bother her for the most part. There is some feedback (that high pitched whistling sound) whenever her ears get too close to something so this is a challenge when she tries to go to sleep on us and during feeding. I had to turn them off at one point today because she kept trying to put her head down on my shoulder and then would get upset and pick it up again as she was trying to fall asleep for her nap. We'll give it some more time but they can apparently try to adjust for some of this if needed later on.

This will be a learning process for all of us and will take some getting used to, but will be our new "normal" with her.  She's basically supposed to have them on for all waking hours of the day.  The technology really is amazing--when listening to them myself (we have to know what they are supposed to sound like so we can check them daily to make sure they are working correctly since she can't tell us if they aren't) you can tell that certain sounds are amplified at different levels, basically to match her hearing so that they don't amplify at the levels where she has normal hearing and do amplify at the levels where she has loss.  Amazing. 

Here are some pictures that I took of our girl this morning with her new accessories. :-) They are small, but so are her ears, so they do make her little ears poke out a bit. Enjoy these pictures of the "new" Emily!

Halloween 2011

We had Buzz Lighyear and a cute little Ladybug at our house for Halloween this year.  It was actually a close call for Noah between Buzz and a Dinosaur costume (as dinos are now the newest obsession).  However, when I found this jetpack/wings piece for his costume, that won him over!

We were able to gather with neighborhood friends again this year for some party/playtime before trick or treating.  We were at the Rotz's this year as the Smiths were busy getting Caleb well in Cincinnati.  Bea's mom and the girls went over to the Halloween party with us so it was great that they got to come along too.  The kids had a great time together, as always.

The roll call this year included our Buzz and Ladybug; Ava and Elle both as Belle; Ella as Ariel; Nathan as a pirate; Bo as Spiderman; and Cam as a Spider (we also had a Care Bear who was new to the group and I'm so sorry to say I can't remember her name).

Emily actually made it though the whole party (thanks to a brief nap) and most of the trick or treating.  Mike took Noah and the girls to finish up after I took Em home.  Once I got her ready for bed she and I sat outside and she snoozed while I handed out candy to the trick or treaters that came to our house.  All in all a very fun night!

 Elle and Noah and Grandma Canas (Bea's mom)

 Noah and Ava

 Whoa there Daddy, is this swing going to hold us?

 "Aaavvvaa!  Come up here!!!"

 Ava and Bo

 Getting sleepy...

 All passed out

 With a second wind after a brief nap--ready to join the trick or treating fun!

 Nathan, Ava, Ella (inside the tunnel), Noah

 This crew is ready to go!

 Really, we're ready!  Someone open the door!

 This was the best group picture I could get

 Ava and Elle-sisterly love

This was the only "action" photo as we started trick or treating.  As the kids were all a little older this year, they seemed to have less anxiety about approaching the doors for trick or treating.  Once we got started the older ones wanted to run right up, get their candy, then take off for the next house.  It was a bit much trying to control everyone this year.  Our neighborhood is sort of a hot spot on Halloween so it was really crowded and hard to keep up with our kids so the camera was quickly put away in light of keeping them safe.  As always though, it's great to watch their faces light up when they receive their treats.  And Noah did end up with a huge bucket of loot.  Guess Mommy and Daddy will have to help him with some of that since we don't want him to have all that sugar! :-)