Birthdays

I can remember as a child thinking that my birthday was the next greatest holiday to Christmas...and really...it was a toss up.  Now. it seems my birthday is more of a glimpse in time to look back on the previous year and forward to all that will be accomplished in the next.  A New Years of sorts.  Each year my birthday happens to fall around the Jewish high holy days of Rosh Hashanah and Yom Kippur.  The Jewish celebrations of the new year and then the feast of atonement.  I had the occasion to celebrate Rosh Hashanah with my inlaws this year, which was such a special experience. Though I'm sure it lacked some of the traditions they are accustomed to, it was so nice to have an occasion to celebrate and to learn more about the holiday.  We each contributed to the meal, including Samantha, who was able to use her Montessori baking skills to help Linda prepare the noodle kugel.  I hope it is a celebration we will share many more times in the future.

As for reflections on the past year.  I will spare you the laundry list of realizations and profound life experiences, most of which are not really all that profound.  The one thought that does strike me is this.  Just about two years ago, as I turned 31, we learned that we were pregnant with Alli.  Obviously at the time we had no idea what all would be in store for us when she joined our family.  But, I remember thinking at my 32nd birthday, surely the next year won't be as challenging as the previous and all good things will be in store for us.  We're due for a good year right?  And it was a good year.  To some it may seem like it was a disaster.  Uncontrollable seizures.  Open heart surgery.  Another dual procedure looming in the future.  Multiple hospital stays of varying lengths.  Constant progression and regression in development.  How could it possibly be a good year?  But it was.  None of those experiences has defined our family.  We make the most out of every opportunity we can to see our family, to get out as a family and have meals together and visit with our friends (when they are healthy :)), we had the opportunity to make a long road trip back to Michigan, and these experiences have brought us closer together as a family.  That isn't to say that there isn't a fair share of raised voices, lost tempers, and many tears of frustration, but there has been the hope of many answered prayers, renewed commitment in each other, and the realization that there is more to life than perfection.  So, I can only hope that the next year will be the same.  That the challenges will continue to strengthen us, that we will continue to grow in faith and celebrate our traditions, and that we will continue to embrace each other as we are, without regard to our individual limitations.

As for the girls...

Samantha first today.  She is really thriving at school this year.  Her favorite tasks continue to be baking, painting, setting the table for snack, playing outside, and we are told she enjoys cutting cucumbers.  We have also seen her really expand herself socially.  She shows a caring attitude toward the younger children in her class.  She greets them as they enter in the morning and brings their shoes over to help them change.  At the end of the morning, when she recognizes the parents, she will take the younger ones by the hand to greet their parents.  She is quick to volunteer to help, which has also extended to our house.  Her communication continues to develop.  Lately she has been emphasizing herself by saying "I SAIIID" if she thinks we haven't heard her requests.  She is also enjoying watching the evolution of the construction of a house around the corner.  She asks us if we can drive by the "house that's broken" just about every time we return to the neighborhood.  She continues to show independence in every day activities and enjoys doing her puzzles.  She also enjoys Mickey Mouse Clubhouse and Mary Poppins.  We are trying to broaden her horizons to include Beauty and the Beast and the Lion King, but she's stuck on Julie Andrews.  So, maybe we'll have to move on to the Sound of Music.  We haven't told her about the new baby yet.  We definitely talk about the baby around her, but have not had the conversation to impress upon her that she will be welcoming a new brother in the spring.  I expect she will be excited and if she is half as caring as she is with the children in her class, I think she will continue on as an amazing big sister.

Alli has been doing well, since we brought her home from the hospital.  We are adjusting to oxygen equipment and how to monitor her sats without driving ourselves (and her) crazy.  We have also seen a welcome progression in development.  We have seen a departure from her right side/right gaze preference.  She has started grabbing her feet again.  She is rolling on her side to both sides.  She is increasingly more verbal in terms of making noises and we have seen a marked reduction in her seizure activity.  I hesitate to say that she is seizure free, but we have seen definite improvement.  We have an appointment with the neurologist tomorrow to discuss our pending trip to Memphis.  Given her recent improvement, we are considering delaying our trip so that Alli can have her g-tube placed and adenoids removed on October 15.  We would prefer for her to have the surgery before going to Memphis in the event she suffers complications around anesthesia that cause further neurological setbacks.  We would delay our trip until December.  Oh yes, and we have seen Alli smile and we can get an occasional laugh out of her.  I think I will end on that note, as that is pretty much the best birthday gift of all.

We'll catch up again soon!!

We're home!

That is all I have to say...well...that and I am really looking forward to date night at the braves game on Saturday followed by o.a.r. concert...yippee!

Have a wonderful hospital free weekend!  Thanks for all of the love and prayers these past 2 weeks.

Looking Good Today!

Hospital Stay Week 2

So, we were hoping Alli would be home by now, however, we are parked here until she has made close to a full recovery. We were cleared to move out of icu yesterday, however, there wasn't a bed for her on the general peds floor yesterday. So, she rested here through the night and I anticipate that she will move some time today, assuming bed availability changes. She has been playful and SMILING during the day and resting fairly comfortably at night. We were elated to see some smiles from her yesterday! My mom and dad arrived late Friday night to give us a hand, which has been super helpful! They will be here until Jason's parents arrive later this week. Samantha is in for some serious spoiling over the next week.

Will update more when we have more information.

Megan

Resting with princess sophie

Labor Day Weekend Update

Hi family and friends,

As many of you know, Alli was admitted to Egleston yesterday afternoon.  She had quite the exciting journey here, arriving by helicopter.  She was admitted in respiratory distress, which they have determined is a result of rhinovirus (common cold to the layperson).  She had a difficult evening and has been fighting fever and working very hard to breathe.  Therefore, they are going to move her in to intensive care so that she will have more intensive nursing care and they can safely take more invasive measures to help her breathe, if necessary.  Right now she is resting somewhat comfortably and I expect we willbe moving soon.

I will post updates as we have more information.

Have a great holiday weekend!
Megan

Update: September 2, 2012

Alli rested comfortably last night and in to this morning.  She is currently on 2 liters of oxygen and they have been able to get her congestion under control with a combination of afrin and deep suctioning.  She is still in icu given the level of oxygen she currently requires.  Our goal is to get her oxygen reduced and her sats stabilized so she can go home.  She then will need to get and keep herself healthy enough to have her adenoidetomy and g-tube inserted.  We would like to have her procedure done before she goes to Memhis the week of October 8th.  As of now we are scheduled to check her in to the epilepsy monitoring unit at le bonheur children's hospital in hopes of getting control over her infantile spasms, if we haven't been able to get control before then.

We will keep you posted with information as things change.  Thanks for all of your prayers, love, and support!

Megan

Update: September 3, 2012

Alli and I had a pretty restless night last night. We were up every couple of hours for suctioning, various bells going off, etc. She has generally been irritable when she is awake, so I have set the rocking chair up close to her bed so we can snuggle. In general she is not a huge fan of being suctioned or the nasal cannula. The doctors came by this morning and said she will likely spend today and tonight in the icu, but will hopefully transfer back down to general peds tomorrow, assuming they can reduce her oxygen. This morning they have her down at 1.5, so that is a start. She is resting now. We will have an ENT consult tomorrow regarding her status and the timing of her surgery.

Thanks for checking in with us!
Megan

Update: September 4

Today was a productive day. Alli moved to the general peds floor this afternoon. We were also able to get her oxygen down to 1 liter. She has been much more awake and very alert and active. It is likely that she will come home with oxygen and a pulse ox machine. The order was placed for both pieces of equipment today. We have not discussed a departure date, but hope to be home by the end of the week. I hope everyone had a good start to the shortened work/school week!

Megan

Hello again!

I suppose I need to change the title of this post to Labor Day week. Alli is back in icu as of this afternoon. After a good day yesterday, she started to show signs of potential pneumonia today. So, she is on pressurized oxygen and an antibiotic to help control any potential bacterial infection. Not a huge fan of antibiotics, but I think they are warranted in this instance. So, we hope for the best and to be able to minimize their use as much as possible. She hasn't had any antibiotic up to this point, so we are grateful for that. Hopefully it will be a short stay in picu.

In other news, we are very excited to share that we are pregnant again with a little boy. He is due March 12 and so far appears to be healthy. We had our 13 week ultrasound this morning and there was no mistaking the gender.

Ok, glad I could end on a good note! Have a good night!

Megan