Wednesday, October 23, 2013

Physical Therapy: It's Amazing!!

Abby is now almost 19 months and she is very close to walking.  Abby's cCMV issues seem to be isolated to gross motor delays, and knowing all of the possible complications, we know how lucky we are to have her be such a healthy little girl.  About a year ago, I started looking into the Illinois Early Intervention program.  We knew Abby's development was slowing down and we wanted to make sure she had the extra support she needed to catch up to her peers.  I called and left a message with the office in my area and a few weeks later they called me back.  It took another few weeks to set up an evaluation, but in early January 2013, she was finally evaluated and diagnosed with a 38% gross motor delay.  This meant she qualified for services.  As a parent, this news comes with mixed emotions.  While I was happy that Abby would be getting the services, it confirmed for me the fact that she was pretty significantly delayed.
Ready to move!

Finding a physical therapist in our area that could work around two working parents proved difficult and it took 2 months for EI to find someone, but she ended up being worth the wait.  When Laura started working with Abby in March of 2013, Abby was 11 months old and non-mobile.  She was not rolling or crawling, she was unable to put herself into a sitting position (but could sit if you put her down like that).  She was not pulling to standing.  I started to dread filling out the developmental questionnaires for the pediatrician because the questions they were asking about gross motor development were so far ahead of her skills.  We set a goal of Abby becoming mobile within the next 6 months.

A few weeks into therapy and we were all learning how to help Abby and what bad habits to look for.  No more sitting with locked knees, no more "w sitting."  Laura would come every week and push Abby to new limits and we would try her new strategies throughout the week.

It only took a few weeks before Abby was able to get into sitting on her own.  By mid-may, she had started crawling (thus meeting her goal!)  By August she was pulling to standing, and now she is cruising on the furniture.

practicing with Shannon as extra resistance


When I think of where she was 7 months ago, I am so proud of Abigail and so appreciative of the work  Laura has done with her.  Abby is currently still cared for in the infant room at daycare, but we are very optimistic that she will be able to move to the toddler room in January and run around with the other toddlers all day.

taking a few steps all by herself during PT!!

Monday, July 22, 2013

Summer Fun

This has been a wondeful summer home with the girls.  We have gone to the zoo and splash parks in the area and had a great trip up to Lake Wisconsin and the Dells.  Watching Shannon and Abby interact and play together is an amazing thing.  They love each other so much.

Shannon is such a big girl now, 3 years old!  She is getting to be quite the negotiator and seems to be outgrowing her naps, which makes my days home with the girls quite long and exhausting!

Attempting to ride her new bike

Our beautiful 3 year old girl!


Abby is 15 months and is crawling all over the place.  In the past few weeks she has started being able to pull up to standing all by herself and we are in the process of ordering her SureStep SMO braces to help her position her ankles better so she can finally start running around with Shannon.  Sometimes it can be so frustrating to have her be behind.  I would love to take the girls to the splash park together and let them run around together, but since abby isn't walking yet, she can't really play in there (unless she crawls on the concrete, which she tries to do).  Abby has also had 5 ear infections in the past 6 months, so she is scheduled to have tubes put in on July 29th.  We are hoping this helps her speech improve because the audiologist said that with the constant fluid she has in her ears, it's like constantly listening with your fingers in your ears.



Crawling

Almost ready to walk

Despite ear infections and Therapy sessions, we have managed to have a wonderful summer.

floating at the cermak aquatic center

Evergreen Park 3rd of July festivities

Devil's Lake

Driving the boat with "Mac"

Our little otters at the zoo

Toddler Play area at Noah's Ark

Lunch at Blue Spoon in Prarie Du Sac

3 year old T-ball through the YMCA

First Picnic at Devil's Lake

Devil's Lake

First S'more

Friday, April 12, 2013

Abigail is 1!!

Our little Abigail turned on on Monday.  She is a sweet and amazing little girl.  This past year has been filled with lots of love for her, but also a little bit of worry because of the CMV.  I am happy to report that she is doing really well!  She is right on track with communication, problem solving and fine motor skills.  Her gross motor is behind, so she is seeing a wonderful physical therapist once a week, and a wonderful developmental therapist twice a month.  She is making great progress since she started seeing them.  It was wonderful to have family and friends get together to celebrate Abby's first year.

Anyway, here are some pictures from Abby's "One's a Hoot" Birthday Party.

Almost ready to crawl




delicious cake!

Thank you Pinterest for the idea!


Tissue paper was her favorite!

Shannon was a big helper

excited to read her new book

started off pretty dainty with the smash cake...

eventually she dove right in!
Outfit from Bella Claire Baby
Tutu from Hannah's Tutus
Decor from The Party Paper Fairy
Cake from La Petite Sweet

Tuesday, November 27, 2012

Growing up Fast


Shannon is officially 2.5 years old and every day she amazes me with how grown up she is.  We have full conversations with each other and sing in the car on the way to school.   Abigail is almost sitting up without support.  She can do it for about a minute before she slowly leans to the side, but she is working hard on getting there.  Every day the two of them bring so much joy to our lives.  Shannon is really starting to dote on her sister, insisting on helping her do everything and making sure I "save her" when she starts to fuss or cry. 

Shannon the Turkey
Abigail the Pilgrim



 
 



 The girls had their "fall festival" at sandbox daycare, where Shannon was a turkey and Abigail was a pilgrim. 














We are looking forward to the upcoming holiday season where we can spend some time with the girls and our families. 

Wednesday, May 16, 2012

Shannon's Second Birthday Celebration

We celebrated Shannon's second birthday on Sunday. We have such a generous family I felt like we should have had a Christmas tree up to stack all of her presents under! Shannon had a blast with her Elmo themed party and really enjoyed opening presents and spending time with the family that she loves.

Starting in on her pile of presents
Our little reader

Trying on one of her new summer hats

Wearing her "incredible big sister" medal

Kissing baby sister after she finished with her presents

getting ready for us to sing

ready to blow out the candles

The ups and downs of pregnancy and CMV

On July 28th, 2011, I found out that I was pregnant with our second child.  I was very excited and a little surprised at how much quicker it happened the second time around.  I called my husband at work with the happy news, and then proceeded to call my parents, my sister, and a few close friends because 12 weeks is just too long to wait to share such exciting news.


I started making plans for our "big official 12 week reveal".  I went on etsy and immediately ordered a "promoted to big sister" shirt for Shannon (then 15 months old) to wear in some pictures I could send to family and post on facebook.  
Shannon making our exciting announcement

I went to the doctor on August 20th for an early ultrasound to confirm our due date.  While I was there I told her that I was having mild flu-like symptoms (chills, aches, extreme exhaustion) and I wasn't sure if they were due to the pregnancy or if I had some sort of illness.  My internet research had led me to believe I had listeria, since August was a weird time to get the upper respiratory flu.  She assured me it was not listeria, did the ultrasound and sent me home with instructions to rest and drink fluids to treat my flu.  A few weeks later, after having the stomach flu (such a lucky pregnancy for me!) I called my doctor and asked her if she would do a quick ultrasound to make sure baby was ok.  She met me at the office and the ultrasound was fine (10 weeks, 3days) but she said the flu I had in August had her a little worried so she wanted to run some extra blood tests.  I went to the lab, gave some blood, and went home, happy that the ultrasound still showed our little peanut doing well.

On September 24th (11 weeks 4 days) I shared the pictures of Shannon  in her big sister shirt with everyone.  I knew it was a few days earlier than the 12 week "safe zone", but at that point I was pretty confident that things were going well.  On the 28th, just 4 days after we shared our news, my OB called me about my blood work.  I had completely put the flu and blood tests behind me, thinking nothing would come of them and that I had been paranoid to keep asking my doctor questions about my symptoms.  Apparently I was not paranoid.

My doctor told me that my test had come back positive for CMV (Cytomegalovirus).  I had never heard of this virus before so I asked her to explain what exactly that meant.  She said it put our baby at risk for a plethora of birth defects, including deafness, blindness, cerebral palsy, learning disorders, paralysis, and death or miscarriage.  I was shocked and devastated.  I called my husband in tears.  I cried to my mom and mother-in-law over the phone.  I took a day to digest the news, and then I delved into internet research.  I was reading journal articles, info from the CDC and NIH, anything I could find so that when we went to the specialist, we would be able to ask intelligent questions and get the most out of our consult.

I found a promising study, run by Dr. Adler, a CMV expert at Virginia Commonwealth University, where mothers were treated with Intravenous Immunoglobin G during pregnancy and this seemed to drastically lower the chances of severe problems due to the CMV infection.  I printed the study and brought it with me to the specialist.  She told us the study was done in Italy, it wasn't a controlled study, the treatment wasn't available in the US.  She said a 1st trimester infection was less likely to infect the  baby, but if the baby was infected, the odds were great that the baby would be severely affected.  She said we would need to monitor for signs of the virus on ultrasound and wait until 21 weeks for an amniocentesis to see if the baby had the virus.  After the amnio, she said we would discuss our "options" which meant continue the pregnancy or terminate.  She said the virus was unpredictable so even if we saw no symptoms on early ultrasounds, signs could show up on ultrasound after the legal termination date.  It was the most devastating doctor's appointment we have ever had.  We left in tears.  This was the low point of the pregnancy.

I went home and continued researching, convinced I had read somewhere that the treatment I had read about was available.  I stumbled across a message board post about Dr. Adler and how he was available by email.  The next morning, I looked him up and emailed him about our situation.  He emailed me back within 45 minutes with a recommendation to see a doctor in the area he had once worked with.  He said I could definitely get the treatments (known as cytogam treatments) and he would talk any doctor through how to treat me.  We finally had some hope. 

I called the new practice and my husband and I made the hour long drive up to Evanston to consult with the new doctor.  The new doctor was patient and very knowledgeable.  She did say we were at a higher risk of the baby being severely affected if I had passed on the infection, but her numbers were a little better.  She said the hospital did offer the cytogam treatment in a study, but my blood levels were just outside the cutoff.  She also said I could look into if my insurance would cover the treatment, but that the hospital typically didn't do the treatment until after a positive amnio, and that couldn't be done until 21 weeks. I felt so helpless.  We knew I had the virus, but the norm was to make me wait 7 more weeks before doing the only known treatment to help prevent the baby from being infected!

A few days later, the doctor called back and said that after the MFM group discussed my case and consulted with Dr. Adler, they decided to let me get a cytogam treatment.  On October 28th, at 16 weeks pregnant, I had my first infusion.  We weren't sure if the baby was infected, but the treatment would not hurt her.  A few days before the treatment, we started doing our monthly ultrasounds to look for the signs that the baby was infected (calcifications on the brain, microcephaly, echogonic bowel) and we found out we were most likely having a girl.

We did the amniocentesis in November and since all of our ultrasounds had been normal, the doctor was very optimistic that it would come back negative.  We did the test on a Monday and after waiting all week, I finally go the call that Friday.  It was positive.  It was a bit of a setback.  We were told that as the pregnancy progressed without any signs on the ultrasound, severe issues were less likely.  Due to the positive amnio, we did do one more cytogam infusion in December, just to help increase our daughter's chances of not being severely affected.

We continued with monthly ultrasounds and non-stress tests.  Everything about my pregnancy was pretty normal except for that stupid flu in August.  We met with a neonatologist to discuss the tests they would do when Abigail was born.  A CT scan, a blood test for platelet count and liver enzyme function, an eye test a hearing test, and a test to see if the virus was being shed in her urine.

My due date (April 3rd, 2012) came and went without the arrival of Abby.  Finally on April 8th, I went into labor.  Three hours after we got to the hospital, Abigail Elizabeth was born.  She was our little Easter baby!  She had no signs of any issues, so she got to spend her first hour with Mike and I before they admitted her for testing.  All of her tests came back negative, except the urine.  She was shedding the virus, but that can occur after they are done fighting the infection.  The infectious disease doctor wanted to run a blood test to quantify how much virus was still active in her blood.  The test was a PCR and he said studies have shown a viral load below 1000 typically meant very little chance of hearing loss later in life.  Anything over 10,000 and they would probably recommend admitting her for an antiviral treatment.  Abby's number came back zero.  This time when I cried, it was tears of joy!!

Abby and I at the hospital

Our family at home

Big Sister Shannon

Easter Baby Abigail


For more information about CMV and pregnancy, please visit
 http://www.cmvfoundation.org/aboutCMV.html

Please consider donating to the foundation as they work to spread awareness about this virus.