Rehab Week 2

Alli continued to make good progress at rehab this past week.  Each of her therapists is encouraged by how well she has responded.

In physical therapy Alli continues to do work in the stander and spends time on the mat working on rolling, supported sitting, and head and trunk control.

In occupational therapy Alli is working on visually attending to the work of her hands and grasping at objects of interest.  So far she finds her oxygen and feeding tubes to be of greatest interest.  We have to keep a close eye on her :)

In speech Alli worked very hard to prepare for her swallow study, which was on Wednesday.  Her swallow study shows that she silently aspirates thin liquids, therefore, for now she can have thickened liquids (thickened to nectar consistency) and purees.  We have been working with her a little each day on oral feeding.  It is a slow process, but she is hanging in there with us.

Unfortunately Alli suffered a setback toward the end of the week and broke her leg.  We are not exactly sure how it broke, however, her xray indicates that she has some degree of osteopenia, which is a precursor to osteoporosis and makes her bones very fragile.  We will be following up with a dexa scan to better understand what areas are most sensitive.  A number of things have contributed to this including the massive amount of steroids she received in the treatment of her infantile spasms, as well as the amount of time she has spent bedridden and unable to bear weight on her bones to help make them stronger.  We are thankful that the doctors were able to identify the source of her pain.  It was a frustrating ordeal trying to figure out what was causing her discomfort but, because were in the hospital, we were able to determine this much faster than if we had been at home.  Hopefully now we will be able to take some extra precautions to help ensure this doesn't happen again.  Alli has a bright purple full leg cast and thanks to some painkillers was back at work today for all three scheduled therapies.  She is such a trooper!

Monday is Alli's 2nd birthday.  Unbelievable!  We will be celebrating with cake and ice cream at the hospital this year.

In other news...Joshua started rolling over from his tummy to his back this past week and is screeching up a storm!  It makes me laugh because he screeches and squeals and laughs at himself.  He is so sweet.  He is with me at the hospital almost every day and tags along to therapy.  I do it partly to practice for what it will be like at home with him and Alli and partly because I just like to have him with me.  He soothes my soul.

Samantha is in heaven with Grandpa John.  They have been busy flying kites, eating out at their favorite restaurants (Willy's and Goldberg's), and playing outside.  Samantha usually lounges in the pool while my dad helps us keep up with the yard work.  Quite a sight.  She comes to the hospital at dinner and enjoys practicing her putt putt skills on the putting green in the courtyard.  They also have a great playscape that she enjoys.  She keeps busy with her nannies, Megan and Nicole in the afternoons.  Megan is here Mon-Weds and Nicole is here Thurs and Fri.  They have very distinct personalities, so it is a nice change of pace for Samantha.  We continue to take her to the library every week.  She enjoys reading while she is there and exchanging her books.

Ok - off to bed - well, probably will catch up on the Real Housewives of Orange County - then off to bed :)  Goodnight!

Rehab Week 1

I couldn't be any more proud of Alli.  She has been a rockstar this past week.  She has 6 therapy sessions each day, plus visits from various medical specialists.  The staff in the CIRU (comprehensive inpatient rehabilitation unit) strive not only to rehabilitate the patient, but also prepare the family, as much as possible, for life at home.  Luckily for us, we are old hat to the medical regimen - medications, feeding pump, breathing treatments, etc.

Alli was measured for a wheelchair today.  That will be her primary mode of transportation until she is able to get around on her own.  We picked a sassy purple color and she will have her name monogrammed on it.

In physical therapy Alli spends one session on the mat working on rolling and picking her head up.  In the second session she works in a stander.  She starts prone and they slowly work her up to 90 degrees. She has been as high as 80 degrees and has done an awesome job.  She works really hard on holding her head up and maintaining head control.  She looks better and better every day.  She will have a stander at home.

In occupational therapy she is working on tracking, joint attention, and focusing her eyes on what her hands are doing.  She also works on head control and weight bearing in various positions.  She has some right sided weakness from the subdural hematoma, so they are focused on strengthening that side in particular.  Yesterday she had music therapy in conjunction with occupational therapy.  It was so sweet to see her attend to the musician while focusing on these specific areas.  It was really neat the way that they incorporated musical instruments in to the session through various shakers, tambourines, etc.

In speech therapy she has been working on non nutritive stimulation, as well as swallowing.  Her swallow gets more consistent every day and she has demonstrated that she has a protective cough.  She will have a swallow study while she is here to determine what consistency of food and drink she can safely manage.  She will also have a hearing test.  So far she has enjoyed tastes of popsicles and today she had her first tiny drops of apple juice.

As she gets stronger we are hearing more of her voice.  It is awesome to hear her making sounds.

We had a team meeting today with a case manager, her therapists, the social worker, a nurse, and a nurse practitioner.  We reviewed the progress Alli has made to date and the goals for her going forward.  Her current estimated length of stay is another 2 weeks.  They continually reassure us that this is just as estimate.  If she is continuing to make progress this date can be extended.  We are so grateful to be there and are excited to see what the next couple of weeks will bring for her.  Everyone has been so helpful and has really gone out of their way to make sure we have what we need to bring Alli home.  Everything from getting us a handicapped parking sticker to working with us to ensure her medicaid application gets filed.  They are amazing.

We have been managing without my mom for a week.  Everyone is hanging in there.  I wish I could say that I was handling it with grace and kept my composure at all times, but my patience wears thin, especially by the end of the day.  We have dinner together every night.  The last few nights we have had all 5 of us at the table.  It has been so special...even though Alli and Josh sleep through it sometimes.  It has been a glimpse in to the future of what our family will look like all together.  It has also been so nice to get Alli outside.  They have a couple of nice gardens at the hospital, so we try to get Alli outside for at least 30 minutes on the nice days.

Ok - sort of a rambling post.  There was so much to report on.  Will keep everyone posted and try to get some pictures from her therapy sessions.  They are great to watch!

She Made It!

Alli's birthday gift to my mom was making it to rehab today!  Her official work begins tomorrow.  She has a busy day full of assessments from PT, OT, and Speech.  On Wednesday next week we will meet with her doctors and therapists to set goals, understand what they have observed over the course of the week, and establish an expectation as to her length of stay.

We are happy to be here!

Moving Day!

Below is the video of Alli's big move to Scottish Rite.  She is all settled in the PICU.  They will evaluate the timing for her to go to rehab in the morning.  It could be as early as tomorrow!  Everything went smoothly.  

We'll keep you posted!

I hold my breath...

A lot. I don't even realize I am doing it. Alli continues to make steady progress. As of this morning, she is down to 5 liters of oxygen. They are talking about transferring her to Scottish Rite early next week. She will be transferred to their PICU ( pediatric intensive care unit) so they can monitor her before she goes to rehab. Her care will still be managed by a cardiologist, but they want the PICU doctors to get to know her in case she experiences a setback during her time at rehab. So, why do I hold my breath? I think partially because I can't believe how far she (and we) have come and partially because I wonder, with every step down, if this will be the step that proves to be too much for her. We have taken such a slow and steady approach and she gets stronger every day. I wish she could finish the weaning process where she is, mostly so the team here can rejoice with us at the end of this very long journey. They have been with us every step of the way. It would be great if they could see it through to the end. But, alas, this is largely a surgical unit and there are many surgeries lined up for the coming days and weeks. So, they need our space, and Alli's needs are not truly cardiac in nature at this point (thankfully).

I don't just hold my breath where Alli is concerned. This week I took Samantha and Joshua to a music program at the Dunwoody public library. There was a group playing called Lunch Money. It was listed as age appropriate for 3-12. Despite my usual rule following ways, I brought Josh and figured he might enjoy some tunes. Two notes in to the first song, josh was in fits. I started to pack up to leave, debating what kind of scene Samantha might make on top of Josh, when the librarian opened up the kitchen in the back of the room for me. I quickly scooted to the back with Josh and watched with amazement as Samantha sat confidently in the front with the other children. She listened and danced and had a wonderful time. She occasionally came back to check on us, but then went right back to rocking out in the front. I was almost jealous of her ability to not worry about how she looked or what other children thought about "her moves" (her "moves" could be the subject of a whole separate blog post). She got tangled up a few times with some other little ones, but everything worked out just fine without adult interference. I was so proud of her. I let out a huge sigh of relief when the hour was over. She was happy and exhausted. Josh is still not a fan of Lunch Money, but was content and playing in his carseat by the time we walked out to the car. I was exhausted from holding my breath. I hope Samantha always has that much self confidence. She is so strong and amazes me every day.

Josh has had a good week. He is getting so big! I trimmed one of his toe nails a little too short and found myself stressing about his red toe for a few days. It is good to know that despite all of the extremes with Alli, that I can still get worked up about the little things with the other two :). Another big sigh of relief when the toe healed and the redness faded away.

In other news, we had an offer on our condo and are waiting to hear back from our agent regarding our counter offer. We have said many prayers to St. Joseph and are hopeful that this will work out. It would be great to have it off of our hands.

Back in the saddle

Excellent News!  Alli has recovered from her episode last week and didn't require intubation.  A sure sign that we are heading in the right direction.  She is still alternating between the high flow oxygen and the bi pap.  She wears the high flow oxygeny cannula during the day and the bi pap at night.  As of today, she is on 10L of 80% oxygen through the cannula and her settings are relatively low on the bipap.

Currently she is back up in her chair taking a snooze after an amazing morning of therapy.  She had speech this morning, followed by a multidisciplinary session with PT and OT.  She was lifting her head during some tummy time, rolling side to side, and making some great vocalizations.  We are so excited to see her regaining some personality.  An EEG and an ECHO are scheduled for this week.  The EEG is to see how she is handling the reduction in one of her seizure medications.  If it looks ok, then we will hopefully come down some more.  The ECHO is just to check in on her heart and the relative function.

Will continue to update as things evolve.  Hope everyone is having a good week!