The Cast

Yesterday was Elizabeth first therapy session with the cast on. She cried big crocodile tears when we put it on, but luckily her therapist had bubbles and that was a distraction. 

 

I am told to do 1 hour with the cast on outside of therapy. The cast is very difficult to put on and it took 2 of us yesterday to put it on her. You think with all our modern technology they could find something easier to use. 

This morning I was able to put it on, but Elizabeth was not happy and again cried big crocodile tears. It breaks my heart and I wanted to cry too. Luckly I brought bubbles with me and she was able to be distracted for about 20 minutes. We will have to try again later. 

This is going to be more difficult than I thought. The cast weighs so much that it makes her tilt to her side. I have to try to hold her up and play with her at the same time. I will just have to figure it out like everything else.

Tomorrow is the BIG day

Tomorrow is the big day that we start Elizabeth's constraint therapy at Kennedy Krieger.  Her first session is at 1 and we will meet the team and the doctors that will follow her while she is there. 

As I mentioned before they will cast her good arm with a removable cast and her therapy will encourage her to use her left arm and hand. I will post pics of her and her cast soon so you all can take a look. 

To be honest I am nervous, but I trust it will be successful! :) 

A crazy week that ended well

This has been a busy week for me because I have been getting ready for Elizabeth's therapy that begins on Monday. I can't believe it is finally happening.

It has been an overal stressful and odd week for me. It has been stressful because I have been busy getting my sub plans for my kindergarten class ready. That was a big job and I still need to get together sub plans for the next 3 weeks. Boo! I am just going to try not to think about it right now.

I am also stressed about her starting the therapy. I just don't know how she will take the whole thing. The unknown can be really hard to deal with sometimes. 

 It's also been an odd week as I mentioned.  I received  a jury duty summons for my county a little while ago and then this week I actually got a jury duty summons for The United States District Court of Maryland. What luck?! I read it and just laughed. Of course this would happen to me!

Then on top of everything my dog has been having some doggy issues so I had to take her to the vet. I learned she has an urinary problem and will need to be on meds the rest of her life. More meds for me to keep track of. Lucky me! 

Just as I was really starting to think the universe was against me and my luck has officially run dry I get a call this morning from Ronald McDonald House in Baltimore. We got in!!! We get to stay for all 4 weeks during her therapy.   It's really great news and a big weight off of my shoulders. One less thing for me to stress about. I really didn't want to have to drive Elizabeth back and forth everyday in the car for 3 hours each day. If you are keeping track that's 15 hours a week in the car if I hit no traffic. With this great news jury duty doesn't seem so bad. 

 

My luck has turned around! Now I need to pack and get ready for the stay. Elizabeth will be in her therapy for 4 weeks. I will keep you all posted on how it is going. Keep us in your prayers on Monday. 

 

Just because...

First Time Out to Eat

The girls are a few days away from turning 17 months old (gestational age 14 months). To wrap up my spring break my mom and I took the girls out to eat for lunch on Monday. It was the girls very first time eating at a restaurant. 

When my mom asked me where we should go, I honestly had not a clue. I didn't know which places had good kids menus or which places had good high chairs. This is something that I had never experienced before. It was not only the girls first time it was a first for me. 

We finally settled on Long Horn. The girls ate a grilled cheese sandwich  and fries. They shared their sandwich and ate  the whole thing. It was their first grilled cheese and they really enjoyed it. 

While at the restaurant they loved looking at all the people and they even both said hi and blew a kiss to the waiter. :) They are charmers. 

My mom bought the girls some no mess markers to the restaurant. It's a special marker that only shows up on the provided paper. Abigail totally loved it. She has really been surprising me lately. Elizabeth liked it too, but she was more interested in the boy she saw sitting at a table close by in another high hair. 

I can't believe we finally went out to eat some place in public. It only took 17 long months,  but we finally got the go ahead from their doctors! It was fun afternoon and a great way to end my break. 

Happy Easter! A time to reflect

Here are a few pictures from our Easter.

Abigail and Elizabeth looked so cute in their dresses! They have to be the cutiest

set of twins around. Don't you agree?

As I enjoyed the day with family and friends I also did some reflecting. This time last year Abigail was still on oxygen and we were just starting to learn about Elizabeth's CP. 

When people say "what a difference a year makes" they couldn't be more right. Abigail doesn't need oxygen or her feeding tube anymore and Elizabeth is making very promising growth with walking. They still have a long road ahead, but when I look back on a years time, all I can be is thankful and proud.  

As I reflected I started to realize how anxious I am over Elizabeth getting ready to start her special therapy at Kennedy Krieger next week. I am nervous, excited, and worried all at the same time.

 I keeping thinking what if it doesn't work? What if she cries every day? What if I don't like the therapy team? What if I can't get into the Ronald McDonald House? And then I also worry about my students in my kindergarten class. I am a working mom, and I take my job very seriously. Taking a month off of work is no joke. 

I allowed myself just a few minutes yesterday to freak out. Let's be honest, sometimes we need it. I got all my fears out and then I just thought after a moment that all of those things really are minor. 

The therapy will work. She will get something out of it. 

If she cries, well then she cries. Babies cry sometimes.

 Kennedy Krieger is an amazing place and I know I will like the team. They are professionals. 

If I don't get into Ronald McDonald House I will get a hotel. That's what credit cards are for right? 

My kindergarteners will be okay without me. I have an amazing coworker who will watch over my class while I am gone. 

I have a busy week ahead of me and have things to do to get ready before she starts on Monday. I told myself yesterday no more freakin out! It's time to go into mommy mode and get things done! This time next year I will reflect again and I know in my heart I will be thankful that we decided to do this therapy. 

I will post updates on how her therapy is going once we start. :) 

Enjoy the pics!

I want to thank my very special friend Megan for talking to me last night about my fears. You really helped me put everything into perspective. :) You are an example of a true friend. 

5 appointments in one day... Oh My!

It's my spring break, so I have been trying to get some appointments done. 

Wednesday the girls literally had 5 appointments. We left the house at 7 AM and got home about 6 PM. It was another long day. 

The girls had appointments at Kennedy Krieger to see their Physical Medicine Doctor and their Orthopedic. They each had an appointment with both, so that made up 4 appointments. We then had Elizabeth's Pulmonary check up at Mount Washington Pediatric Hospital, so that made up the 5th appointment.

While at Kennedy Krieger both girls had hip X-rays. Liz got a hip X-ray because of her CP. Children with CP are at risk for hip problems. The good news is her hips looked exactly how they looked about 5 mounts ago, so the doctor is pleased there has been no change. 

Abigail got a hip X-ray as well but for a different reason. She has dimples in her skin where her hips are. The dimples are concerning and the doctor has been monitoring them. During this visit Abigail had a hip X-ray done so the doctor could take a deeper look. It turns out that her right hip is currently out of socket a little. She will need a repeat hip X-ray during her next visit. There was no real explanation as to why it is out, they will just keep watching it. 

The orthopedic diagnosed Abigail with Hypotonia during the visit too. It basically means she has poor and reduced muscle tone. She is weak and isn't walking yet by herself. They are not sure what might have caused the hypotonia. It could be the fact that she is a micro-preemie, it could be because she had her brain bleeds and hydrocephalus, or it could be "a preemie thing." I just hate the "preemie thing" explanation, but I have learned to deal with it. 

The orthopedic wrote up a script for some short orthotics that she will wear with her shoes. I have an appointment next week to take her to get fitted for them. Just what we need, more appointments. 

Now on to Liz. Elizabeth's doctors are happy with how she is doing, but they are looking forward to her starting her constraint therapy on the 28th. I can't believe it's a week away already. I am nervous already. 

We left Kennedy Krieger and had a little more than an hour so we visited my good friend Anna and her son Nicholas in the city. Nicholas is a fellow micro-preemie friend and the girls got to play with him for a little. It was the first time the girls have had any interactions with another baby so it was fun to watch. They were mesmerized by him and I was glad to see them together. 

After Anna's we went on to the Pulmonologist.  Elizabeth is doing well and the doctor even said we can stop her inhaler this summer. She may need it here and there if she gets a cold, but overall her lungs sound good and they are getting strong. 

It was a long, long, LONG day. The good news is we knocked out a

bunch of appointments. My girls continue to be amazing and I continue to learn and figure everything out as I go. 

Notice one shoe on and one shoe off. 

Waiting for the doctor 

I want to thank my mom for coming along to help. Couldn't have done it without you. 

Top 50 NICUs

Top 50 NICUs have been announced. The data is from a U.S. News survey on children's hospitals.

You can check out the like at:

http://health.usnews.com/best-hospitals/pediatric-rankings/neonatal-care/data 

Johns Hopkins is ranked 12th. Not surprised at all that they made it in the top 15. 

Each hospital was evaluated on nurse staffing in neonatal intensive care units, ability to prevent bloodstream infections, reputation of the doctors, and patient volume.

The Top 5 are: 

Tubes Times Two

Ear, Nose, and Throat Doctor was today at Hopkins. 

The girls and I left the house at 6:30 AM today to make it to our 9 AM appointment. We picked the babysitter up on the way for another set of hands. The girls are such troopers! I can't believe we had to leave so early. 

Before we saw the ENT team Abigail had a hearing test done with their Audiologist. We learned that she has difficulty hearing some high pitches in her right ear. It isn't anything too worrisome at this point. The doctor will just monitor it. 

We moved on from the hearing test to the ENT team. Two Residents spoke with us first and then their doctor came in. I get the feeling the Residents like talking to us. Abigail and Elizabeth have a lengthy medical history and they have been through a lot. It's a good learning opportunity for them. 

Both girls have had about 5 ear infections since the last visit to the ENT doctor in November, so I was not surprised that the girls will need tubes. Their ears were clear today, but it's because they just finished 10 days of antibiotics yesterday for an ear infection. Go figure they would be clear today of all days. 

I haven't scheduled the tubes yet because I haven't talked to the scheduler. I was instructed to call Wednesday. Scheduling will be tricky since Elizabeth is about to start a month long rehab program, but we will work it out. 

I mentioned a few posts back that Abigail's Pulmonolgist stated that we might need to have Abigail's adenoids removed because she snores and has some sleep apnea. The ENT doc reviewed her sleep study results today and said that she agreed that she needed them out.  Abigail will have her tubes put in and get her adenoids out on the same day. She plans to keep Abigail for the night because she wants to motor her breathing after surgery because she has lung disease.

The girls are just about 18 months old now. This surgery means Abigail will be put under with anesthesia for the 3rd time and Elizabeth is on her 2nd time. That's a lot in their short life time. Some adults haven't even had anesthesia that much. 

The life of micro-preemies is never a boring one!   

The girls are happy to be home from the doctors! Now it's time to play! 

First Shopping Trip

Flu and RSV season is coming to an end after a very long, LONG winter. 

As many of you know we were told to keep the girls in our home (on lockdown) for flu and RSV season. 

Well friends... Flu and RSV season is just about over! We made it! The girl's pulmonogist did tell us to be careful until the middle of May, so we are not going wild just yet, but we are making "baby steps." 

Today my mom and I took the girls to the mall. Elizabeth looked at everything and all the people. Abigail was pretty bored because just strolling along in the stroller really isn't exciting enough for her. It's so interesting to see what they like and to learn how they are different. 

As we were walking around we went by the Build-A-Bear store and we saw a person dressed up like a big bunny. I of course just had to get a picture taken so we stopped.

Elizabeth really didn't know how she felt about the big bunny and Abigail just looked up in amazement. Finally something worth her wild! 

Another person at the store was passing out bunny ear hats and she was nice enough to give the girls each one. Elizabeth took her hat off right away because it was getting in the way of her people watching and Abigail wore her hat for about 30 minutes straight! I couldn't believe it. She hardly moved once the hat was on her head and every once in a while she would gently feel her head to make sure it was still up there. Never and I mean NEVER has she been that still for that long. Amazing... All I needed this whole time was bunny ears. Lol

They are such silly girls. It was a nice first shopping trip! I am just so glad to finally get some normalcy in my life. 

Tomorrow ENT Doc. I will keep you all posted. 

NICU Follow-Up Take 4

Yesterday was the 4th NICU Follow-Up appointment. I can't believe we are on 4 already! I always hate and love this appointment at the same time. 

Let's begin with the hates, or I really should say dislikes. My mother taught me not to say hate, so I will change it to dislike. Love you mom! :) 

The appointment always takes forever.  And what I mean by forever is FOREVER. We left the house at 11:30 and we didn't get home until 7:30 PM. That's a long time if you are keeping track.

I also dislike that no matter how well they are doing, I know I will hear that they are behind in some way. I know they are behind, but hearing about it is something else.

Now on to the likes. You will be happy to know that I have more likes than dislikes. 

I know I said that I hated that the appointments are long, but I also like it. The John's Hopkins NICU Follow-Up team is wonderful. They really check the girls out and they construct a good developmental screening.

I also like that the  during the appointment I can brag about how well the girls are doing and discuss their latest tricks. Like for example Elizabeth blows kisses to everyone she sees and Abigail has learned to say "tickle" and she will even stick her foot out so you'll tickle it. :)

I enjoy seeing familiar faces when we are there. Yesterday we ran into one of the NICU doctors that took care of the girls. She was very pleased with how they are doing and that made me proud. 

Finally I like that the team is on top of everything. They really listen to me and they are not afraid to refer me to someone else if needed. For example they scheduled Abby to see the same orthopedic team that follows Liz. 

I am concerned with Abigail's feet when she walks. She wants to stand with her feet pointed out like a V and she tries to walk that way too. She isn't walking yet independently, but is an amazing cruiser. 

When we are there at the appoint they go over how they are doing verbally and cognitively based on the developmental screenings they completed. The good news is I wasn't surprised by any of the results. 

I have always learn a lot when I go to the NICU Follow-Up appointments and I recommended other preemie parents stick with them. We were going ever 3 months, but now we don't have to return for another 6 so it does get less frequent. And that's another like! 

 

What Do You Think?

Both girls are under the weather again. :( Their perfect little noses have been running and they have a little cough. 

My husband Dan took both girls to the doctors on Friday along with the girl's babysitter. She went along to help since I had to work. Taking twins to the doctors by ourself is seriously almost impossible.  It's unbelievably hard to entertain them both and talk to the doctor all at the same time. I know it will get easier as they get older, but right now we always have to make sure we have two adults there. 

So anyways, Dan is at the appointment and he is trying very hard to keep Elizabeth happy while the babysitter entertains Abigail. Our appointment time was at 2:30 and it was already 3:30 when a doctor came in to the exam room. She didn't come in to exam the girls, she actually came in to complain that Elizabeth was being loud and making a lot of noise. 

My first question is- When is it ever not loud at the pediatrician's office? My second question is- Are you kidding me? 

From what Dan tells me Elizabeth was patting the little countertop in the waiting room like it was a drum. She was happy and giggling about it.  

Meanwhile, I was told that their was a baby screaming in the room next to them. Typical in a pediatrician's office. 

I wasn't there, but that doesn't mean I will not say how I feel about the situation.  I am very upset and here is why...

Dan and I are not one of those parents you may see out and about that lets their kids do whatever they want. We are already teaching them boundaries and we will tell them no when appropriate. If Elizabeth was being too loud, I know Dan or the babysitter would have directed Elizabeth's attention elsewhere. 

Also, the girls were both happy and not crying, so that is a big deal in itself.   We have twins lady! It's hard work! They had already been waiting an hour and that's a long time for toddlers. It's pretty much like waiting a week to them. Instead of complaining about her being "loud" your lucky they didn't complain about how long you were taking. 

Even if Elizabeth was patting on the countertop and making a noise, it's not like she has some sort of super baby strength. She is a year and a half old for goodness sack! It couldn't have been that loud. 

I wasn't there and I am glad I wasn't. The doctor isn't one of the doctors that normally sees the girls and she wasn't even the doctor that came in and evaluated the girls later on. If I was there I might have said something smart back. That's the Fowler in me. 

I can't believe the doctor had the nerve to complain. It seriously made me consider finding a different pediatrician office. 

Am I overreacting here? What do you think?

Throwback Thursday Pictures

They have always been so beautiful!