Toddler Speak

In other speaking news, the munchkin says "don't" instead of "doesn't" and always adds an 's' to her verbs. All day long we are treated to
"it don't fits here"
"it don't works"
"it don't spills"

And I love it, I want to capture it on film, and roll around in the adorable-ness of her cuteness. As much as I pushed the princess to talk clearly and move past the toddler-speak, I cling to these cute little phrases the munchkin says.

Other things she say that I adore include -
"hook" for hood
"jammits" for jammies
"p-jammits" for pajamas

And the way she says the princess's name - it is a short name but the munchkin turns it into a mouthful.

Thanks for listening!
~Erin

Growing up!

A couple weeks ago, the princess said something to me that included the word "regular". And then she looked over and said, "I have trouble saying that word. Can you tell me how to say it?" And I think a little piece of my heart broke.

Since she was young, her vocabulary has been phenomenal. At 18 months she could talk to my mom - who is hard of hearing - on the phone and my mom could understand most of what she said! She has been talking so well, and so clearly, for so long that it rarely phases me anymore. I used to marvel at how well she spoke. But, this one word - regular - was always a challenge. She says "reg-le-are". I have never worked to correct it because it was really the only semblance of "baby-speak" she had. I kind of liked that she still had this young trait! But, now she recognizes that she says it incorrectly. That fact alone blows my mind. And ever since we worked on it - "reg - U - lar" - she has been working hard to say it correctly and to correct herself when she slips back to "regleare". I am amazed at how self aware the princess is. I just hope she always recognizes that as a good thing and does not let her overly self-critical mindset get in her way!

Thanks for listening!
~Erin

Postpartum Needs

I have (thankfully) not had too many postpartum emotional meltdowns, but tonight I came close! Luckily, my husband was on the way home and I could let him know - via text - how I was feeling and what I needed. Thank goodness for text messages, otherwise I would have had to risk being set off by something he said or didn't say! The last couple days I had some stressful personal stuff going on, when combined with the end of the week pent up feelings, lack of sleep, and a three-year-old who has taken to waking us between baby feedings at night made for a tough day for me! So here is what I learned and hope to remember for future rough days: 1. Fresh air is critical. Get up and go for a walk with the kids or at least stand on the deck with a cup of coffee. 2. A shower, especially when the husband is home or the kids are napping, can erase all feelings. If there is time to shave and lotion, do so. It is like wiping the emotional slate clean. 3. If there is no time or energy to tackle the cleaning, run the vacuum. Having a clean surface will suffice. If there is time and energy, run a Clorox wipe over the bathroom counters and toilets. Takes 10 minutes!

How are we doing?

This is the question I get asked the most. We are doing fine. Great, actually! But I'm not sure everyone buys that - and based on the number of compliments I get about how "great" I look, I don't think the reason is because I look disheveled. I guess people expect we would be struggling or it would be difficult to process. The thing is, for me, there is very little to process at this point. We knew her arms would be short, we knew she maybe had some fingers. Tests showed her organs to be good and all her other bones to be growing fine. And then Maggie arrived, perfectly healthy, with five working fingers. We still have all the same questions we had before - what caused this? What other issues might she have? What can we do to help. But, now, instead of lingering questions, we have doctors appointments and tests to help us find the answers. As we get some things answered or at least ruled out, we will have more to process and as Maggie grows and the effects of her limb reduction become apparent, we will have hard times. 

I think that there were people in our life hoping and praying that she would miraculously grow arms. Right up until the day she was born. And now that she is here, and they can see she does not have arms, it is hard for them to face that. There is a grieving process associated with the loss of that hope. Grieving that loss does not diminish in any way how much they love Maggie and recognize what a sweet baby girl she is. So, I hope our friends and family who were wishing for the miracle that did not happen, do grieve and do not feel guilty for doing so.

That being said, I am not in the same place. I never prayed for a miracle or that Maggie would grow arms. I do not have any regrets about that - when we first found out at our 20-week ultrasound, I barely prayed at all. I just got lost in thoughts. It was not that I was mad and NOT praying, I just found it hard to focus. I was shell shocked and not sure what to think about, so I just generally prayed and thought about everything that was going on and figured that I would eventually be able to reorganize thoughts into directed prayers. After the tests and the visits to Children's, it was fact that she was missing bones and science that the bones would not grow. So, to me, praying for that miracle seemed pointless; I prayed for an otherwise healthy baby. Also, based on the outpouring of love and support from family and friends, and the amazing resources and stories we read on the internet, I really started to see what a wonderful gift we were given. If I could have gone back in time and had a perfectly normal sonogram, I would have chosen that path. But, once we were on this one, I never wanted to turn around and go back. 

For me, my prayers were answered. And I hope that my logical, somewhat unemotional, approach to life is not hurtful or insensitive to those I love. 

Thanks for listening!
~Erin

Maggie's First Visit to Children's.

I cannot say enough good things about Children's National Medical Center.The personnel - from the doctors to the administration - are wonderful. I called the genetic counselor to set up an appointment not long after we got home from the hospital. She asked all about Maggie and how we were doing, then asked when WE wanted to come in for a visit and said she would get back to us. When she did, it was to ask about a few dates, so I picked one and then she said she would get back to me to confirm. She called back just a few days later to say that not only did she get us an appointment with the Geneticist, but also had coordinated with the Orthopedic doctor so that we could "head up" after we were done in Genetics. Both appointments were going to be at the DC location so that they would have access to the labs and x-ray machines if they wanted to do any tests that day. She apologized that we would have to drive in to DC, but thought that was the best option so that we could get everything done at once. The whole experience was mind-blowingly awesome! A hospital apologizing for my inconvenience! Someone willing to make all the calls and set up appointments around my schedule! What more could a busy parent want?! It is awesome that we can rely on the genetic counselor to help us coordinate appointments and to work with our insurance to get pre-authorization for things. Plus, everyone gives us their card and encourages us to call with any questions. They even encourage us to email or call anytime - they would rather we ask the question than to work ourselves into a frenzy or google ourselves into anxiety! We are so blessed to have such great doctors essentially right down the street!!!

So, last week we met with the Geneticist (Dr Rosenbaum) and the Orthopedic Doctor (Dr Tosi) at Children's. The genetic counselor for Dr Rosenbaum set everything up for us so that we were able to see Dr Rosenbaum and then go right up to Ortho. Both doctors agree that basically Maggie appears to be a perfectly healthy baby with "limb reduction". Dr Rosenbaum wants to do chromosome testing to see if she has SC-phocomelia, which is on the Roberts Syndrome spectrum. The spectrum is huge, so he cautioned us not to get too caught up in the language of the syndrome because even the doctors have to be careful not to generalize. For instance, Maggie has a stork bite on her nose and also her eyelids and the back of her head, which can be associated with Roberts. But she does not have a cleft palate and appears cognitively on point (she can focus on and follow keys when waved in her face). The bottom line with Genetics is - there is not much for them to do, but they do want to do the Chromosome testing and see her back in 6-8 weeks just to "chip away at the list of possibilities". The geneticist believes her limb reduction was caused by two vascular events, where the blood vessels feeding her arms were pinched or somehow affected during the critical development time period.

After genetics, we went up to Ortho, where they did x-rays of her spine, hips, arms, and hands. Her hips and spine are great. Her arms have the humerus (top half) bone in each arm, some of the bones that make up the palm, and fingers. Each hand is connected at a joint, which is good. The ortho doctor wants to see us back in 6 months for an updated x-ray, but does not see much involvement for ortho. She recommended we see a hand specialist, who thankfully is based out of fairfax (much closer to our house!). But, yesterday, there was a hand specialist at the DC location, who came in to check Maggie out. She agreed the hand doctor would probably be Maggie's primary "specialist" and gave us a hand out with some great websites to check out for resources and community support. 

Maggie can just about reach her mouth with her hands now, so her biggest challenge will be toileting. The hand specialist will likely recommend physical therapy and occupational therapy. According to the Geneticist, there is a great children's therapy center just minutes away from us, which is great too! Through PT and OT, hopefully she will be able to develop her hand/finger muscles to get more use of them. Her right hand can grasp pretty well, but her left arm is significantly more under-developed. We will see what kind of program we get on with PT and then hopefully after a few months will be able to project more of the future. The hand specialist may recommend surgery to "turn" her hands - they are currently like club-hands - pointed backwards. They would also discuss prosthetic options and would be the place to get fitted for prosthesis if we choose that route. At this point, that is very far into the future as we want to develop what she has. Plus, we don't want her to become dependent on something like that when kids born with limb reduction seem to have much success with using what God gave them. 

Thanks for listening!
~Erin

3 weeks old!

I cannot believe our little one has been here for three weeks already. Time flies for sure, but also we have done a lot in these last few weeks. In the hospital, I realized we would probably have lots of appointments and such for her, so I went ahead and made a bunch for me - the dentist, dermatologist - and the kids - well visits and the dentist. We been knocking them out like crazy! I feel like every week my Mint Weekly Summary shows the most used category as "Health/Doctor". Of course, baby Margaret has had her fair share too. The 3-day visit, the follow up for jaundice, the weight checks, and our first set of appointments at Children's.

Our baby is healthy. Very healthy! She spent her first night home eating and pooping every 90 minutes and the jaundice was gone the next day. Everyone who checks her out declares her fine. Her heart, lungs, kidneys, muscles, everything looks good. Bottom line - she is a healthy baby with isolated phocomelia. That is exactly what we were prepared for and everything I prayed and hoped we would get!

Thanks for listening!
~Erin