Wake Up and Sing

Well, today was rather uneventful for miss Evelyn. She is still struggling with pancreatitis; which can be pretty painful, so she slept a lot today. Her trach healing and breathing are still going excellently, and we will begin some 'heated trach collar trials' tomorrow - which means that she will spend some time off of cpap, breathing completely and totally independently. It is really a tiny step up from what she's already been doing, but is the next and final step towards 'wirelessness'. If her pancreatic enzymes still look wonky tomorrow then they will do a CT or MRI to get a good look at her pancreas. Due to a lot of air (gas) in her intestines, the ultrasound tech couldn't see her pancreas at all today.

Aside from a Daniel and Kim - led trach change, and more training for us, the only other things of note today were visitors. We continue to have the opportunity to visit with so many wonderful people, and today was no exception. This morning I had a really nice visit with a woman from church, and this afternoon Evelyn had a visit from Memri and Jacque from the Center for the Visually Impaired's BEGIN program.

Ms. Jacque was Evelyn's first vision therapist; she is also a musician, artist, professor at Morehouse, and is THE baby whisperer. Memri is a family counselor, cheerleader, motivator, and has the best dry wit in the south. These two women are both remarkable - when a baby is diagnosed with a vision impairment, and is fortunate enough to be referred to CVI, Memri and Jacque and the staff of the BEGIN program enfold that baby, and family, with love and hope. From one on one vision therapy, counseling for families, and Wake Up and Sing (the most wonderful music group ever) the services they provide are immeasurable - yet magically free of charge. Today Ms. Jacque brought 'little David' (her traveling guitar) and sang some songs for Evelyn, and Memri reminded Evelyn of just how wonderful she is, and how loved. There is a very rich peace and joy that you can't help but feel when you're around these two ladies, and in fact it became a 'must do' every Thursday for Evs and I to come to CVI for Wake Up and Sing - sometimes more for me than for Evelyn.

Having a connection to the Center for the Visually Impaired early in Evelyn's life was so valuable for our family. We met and made some very good friends, learned so many great skills for working and living with Evelyn, and most importantly - we learned that it was okay to be happy. For a while after receiving a tough diagnosis it seems like a betrayal to think about the mundane parts of life - after all, your child has *seizures* or *is developmentally delayed* or *is medically fragile* - and since managing all of that can easily consume your life, you start to think that that is all your life should be about. The simple act of coming to CVI and singing with our baby, talking to other parents and developing relationships reminded us that our lives should revolve around God, not Aicardi Syndrome. It was a place where everyone was dealing with the same kind of 'stuff', so if so-and-so got a haircut, maybe it was okay to think about things like haircuts and toenail polish and (in Daniel's case) GT football again.

I guess what I'm saying is that BEGIN is a very special place, and Jacque and Memri have something very special within them. If you know anyone of any age who is visually impaired, please tell them about CVI - they service people ranging from 0-100 years old (and older!). If you feel so inclined, consider making a donation of money or time; it is a very worthy cause.

http://www.cviga.org/

Giving Thanks

Given that it's been eleven days so far, and I think we might be at least a tad more than halfway done with this hospital adventure, and given there isn't anything remarkable to report on today, I'd like to say a ginormous thank you to a few people. Well, okay, more than a few people. :)

The thoughts and prayers of hundreds, possibly thousands - have really touched our hearts and continue to give Daniel, Evelyn, Owen and me energy, hope and strength. There really is great power in prayer, and I believe that that power is in giving those you're praying for the grace and peace to accept God's will.

Our wonderful, dear family. Claudia and Jerry (aka CC and Pop) have given up their empty nest temporarily to host whichever worn out, grouchy, and likely stinky parent walks in the door each night - and Claudia has been loving and caring for Owen all day every day while Daniel is at work and I'm at the hospital. Owen is a sweet little guy, and CC loves him - but chasing a two year old all day is no small feat - and we really are so grateful for her willingness to do so. Her servant's heart is an inspiration.

Aunt Megan and Auntie RoRo - so much energy and positivity and love - you guys keep me going; whether its spending time with one of our little ones so we can 'get stuff done' or just giving encouragment - you guys are awesome. And your husbands are pretty cool too. :)

Our other family near and far - we feel you with us. Thank you.

Our friends and church family. Wow. Whether its a visit, a phone call, an email or a meal - you've inundated us with love and support, and even those little 'likes' on facebook are a reminder that our family is thought of. I am so thankful to know so many wonderful people who are so willing and even eager to step into our world - even when it means hospitals and seizures and potentially scary stuff.

All of you, as I've thought so many times, are the reasons that Evelyn is thriving and joyful. You are the reason our family, in general, succeeds. Alone, just the four of us, we have faith and love and hope - but without you it would be so easy to lose sight of those things. Having you wonderful people in our lives nourishes us in a way we could never do for ourselves. You are extensions of God's grace - we love you, we need you, and we thank you.

:)

Rollercoaster of Love

*picture created by Will who attends our church with his family - he said he made most of the trees pink and purple because Evelyn always wears those colors. I think Will is a true artist in the making.


When the Red Hot Chili Peppers wrote that song, I doubt they intended for the title to be interpreted the way I'm about to, but oh well.

I think that our love for Evelyn causes us to ride the rollercoaster of life with her - including this hospital stay. On days when she's making good progress, feeling 'better' and looking like her sweet self, we're up. On days when she's not feeling so hot, we're down. Yesterday afternoon and evening were pretty 'down' for Evelyn and me. Evs continues to make great progress with trach healing and breathing independently, and Daniel and I are learning and practicing and feeling good about caring for her properly when we come home. Unfortunately, for no clear reason other than the stress of the surgery and extra medications, Evelyn has developed a mild case of pancreatitis. This is basically an inflammation of the pancreas, and is treated with stomach/bowel rest, and rest in general. It can be pretty painful, and has been bothering Evelyn some periodically throughout the last few days.

Yesterday we moved down to the TICU, and between stomach pain and other tummy issues Evs just didn't seem happy. She also had a lot of trouble sleeping last night; didn't really go to sleep until around 3am and was up again at 6. Because of her other tummy trouble the nurses and I were worried she might've contracted c-diff (a very nasty intestinal bacteria) - luckily she did not. But, prior to learning she was in the clear, Evs and I were both rolling downhill at top speed from all the sleep deprivation and worry (and in Evelyn's case, all the discomfort). It was one of those evenings where you're not very proud of yourself, because you feel so tired and so worried and so, basically, selfish in your fear that you lose all perspective.

The great gift though, is that in the midst of riding this rollercoaster it becomes so clear how steady God's presence is. Our weakness of spirit may cause us to ride the waves of our emotions, but we can rest a little easier knowing there is always a steady hand on our shoulder. I'm not proud of my imperfections, but I'm thankful that sometimes feeling so ridiculously miserable gives me a chance to see God more clearly, and be reassured.

Evelyn has had a better day today, and so have I. Pop and CC visited with Evs while Daniel and I took Owen to lunch and to the park (beautiful weather!), and then Owen and I came back to their house and both napped. Evs hung out with her Daddy, and is still not feeling super fabulous, but slowly the pancreatic enzymes are moving toward the normal range - and as they do so her discomfort should lessen.

Thank you so much to everyone who is praying, and thank you to those who have called or visited as well. It is so nice to see a friendly face walk into your hospital room, and I know it helps Evelyn to feel loved and supported, and to remind her that there is an end to this hospital stay and a life outside waiting for her.

Tomorrow I will be with Owen in the morning, then Auntie RoRo and Aunt Megan will hang with our children while Daniel and I go home to set up new storage for all Evelyn's accessories, and make more meals for her. I will be at the hospital Sunday night and Monday, and I'm looking forward to helping Evelyn get through these next couple days, bugging the doctors to keep us moving in the right direction, and getting one day closer to being at home again.

:)
Kim

Big Progress! and little challenges.

So guess what?!? Evelyn is officially off of ventilator support, and is receiving cpap (air blowing) with each breath she takes on her own. This means that probably within the next 24hours she may well be wireless. :) This also means she's a champ, because this is a 'fast wean' off of the vent.

As with any surgical procedure, the anaesthesia and sedation S L O W down the digestive tract - which means starting it back up can be a challenge. Sweet Evelyn is doing her best to help move things along (to put it delicately) but her tummy really hurts right now. We have a consult with her gastroenterologist set up so we should be able to talk with them sometime this afternoon to take more action. Basically, she's full of gas.

In other news, Evs has been awake all day, and given the gas issue has been in pretty good spirits. Lots of music today, and watching pbs, and receiving gifts from her fan club. :) Her behavior and general demeanor (when awake) have reminded me of just how quickly she's growing up. wow. The only other things of note today have been more training (the checklist is nearly filled, but the preferred teaching pace seems to be extra slow) and I've gotten to put some new skills into use working with Evelyn's trach. I'll repeat, for the millionth time, that this stuff is reassuringly straightforward.

I've gotten some questions about visitors - and yes, please feel free to visit! If you're not a frequent hospital visitor, here are some important points to take note of:

• visiting hours are 8am to 8:30pm, but most sleepover parents aren't decent until closer to 9am (even though we've been awake since at least 6am)
• there is always something happening, about to happen, or something has just happened - so expect people to walk in and out of the room - no big deal
• because of all the hustle and bustle, it is best to limit visits to under an hour
• call before you come, in case there has been a room change, or a change in the patient's health that might warrant rescheduling the visit
• the visit itself is the important part; please don't feel any need to bring 'stuff'.
• for Evelyn specifically, please know that we can't predict when she'll be awake, but if you don't get to see her eyes during your visit, you're welcome to come back - but even if you can't, we will be sure to tell her you came

If you don't have my cell phone number, and want to come visit, just post a comment here on the blog, or email me at kimberly.forester@gmail.com Since this blog is public, I'd rather not post my phone number here.

See you soon!

Kim

Feeling Crabby?

Evelyn continued to do lots of sleeping today, but in the afternoon and early evening she actually woke up! In the picture here, she had *just* kind of a little bit opened her eyes and begun to consider what being really awake might feel like... so as a result she looks a bit, well, crabby. :)

Later in the evening, however, she was wide awake and answering questions and chose a movie to watch, enjoyed a good bath, and chose braids as her hairstyle (at her nurse's urging). When given some choices, Evelyn did not feel 'good' or 'bad', but she did feel 'funny' and 'weird'. She also said that her neck does not 'hurt'. So that's good. She has been awake probably five or six times since mid afternoon, usually for about twenty minutes at a time. She did manage to stay awake for about half of The Princess and the Frog, but she really likes Princess Tiana, so... :)

Evelyn is really a trooper - even though it obviously isn't fun to have surgery, be in the hospital, be all doped up for days, learn how to breathe through a new little hole in your neck, etc - she wasn't fussy when she woke up, she didn't seem scared, she just seemed a little grumpy. I personally would probably be a LOT more than grumpy. I continue to be so thankful that she is able to communicate; seeing her understand as much as she's able to the reasoning behind this surgery and hospital stay, and being able to exert small bits of control like choosing a movie - I know that those things make this experience much more bearable for her. There was a time when Daniel and I felt very skeptical about Evelyn's level of 'cognition' - a long time actually. I know that some reading this haven't really experienced Evelyn's talking firsthand, or have seen her on a bad day, or a sleepy day, and may doubt her ability. Well, all I can tell you is that there is no skepticism in our heads or hearts anymore. In large part, that is because we've seen her respond too well too many times to doubt her. The other factor is that far too many independent professionals have worked with her and seen the same things.

Now, don't get me wrong - I'm not saying Evelyn is a rocket scientist, and I don't have unrealistic or even specific long-term goals for her intellectually - I just know that right now, she is a very typical almost-five-year-old in her mind and in her heart. She knows her shapes, colors, letters and other preschool stuff; she knows how she's feeling and what she wants, she knows who all the people in her life are and how she feels about them, and she understands why she's in the hospital and what she needs to work on to go home.

I'm not sure why this post went in this direction, but I suspect it is because it is hard for people to believe without seeing. It seems easy for many to have faith in God, or in themselves - so why is it sometimes hard to have faith in a child? When someone we love seems not to 'get' Evelyn it hurts; and often it is just a matter of time and circumstance. Evelyn isn't 'in action' all day long every day - she's too medically complicated for that - but she's in there.

The idea of a lack of faith is applicable in so many situations where special needs are concerned. There is a big difference between being in denial and being realistically hopeful - and I believe that the moment I say something is impossible, it becomes unattainable for my child. I was talking to our nurse tonight, because she was asking about Evelyn - and I said that though I would be extremely (and pleasantly) surprised to see Evelyn walk someday, that I would absolutely not say that she never will. It would be a surprising accomplishment for her, given the many physical issues she faces - but if I believe that it will NEVER happen then it won't. We don't live our lives daydreaming about miracles, or imagining Evelyn to be someone she's not - we live very much in reality - watching her have seizures, struggle to breathe, spend way too much time in the hospital. We face the reality of a shortened lifespan, of continued trials and problems, both medical and otherwise, and we face the reality of looks, comments and a gross lack of understanding from the general public. The reality is that Evelyn is super-complicated, and that includes her brain, which is all mixed up structurally, but works just fine for thinking, thankyouverymuch.

I love you guys, and I know that parts of this post seem a little, well, crabby. This blog is intended to keep people informed about how Evelyn is doing day to day - when things are busy and when they're not - but it is also therapeutic for me, and a way to 'say to the world' what I wish Evelyn could say for herself. So, that being said, please don't take the crabbiness personally, because it probably isn't directed at you. :)

the waiting is the hardest part

We are SO ready to see Evelyn awake, and short of a few brief blinking episodes, it hasn't happened yet. This is okay, medically, but a little frustrating for all of us since we haven't seen her awake and really happy for at least a week, if not two or three.

Today was busy for Daniel and I, and quiet for Evelyn. Daniel zipped from the hospital to work, and at work from meeting to meeting, then back to the hospital. I woke up with Owen and helped him start his day, spent an hour in rain-delay traffic, gave Evelyn a sponge bath, had a nice visit with a friend, did some trach training (today was cpr with a trach!) had lunch with another friend who works at the hospital, then finally got some Evelyn cuddling in, in between feeding her and learning how the ventilator works and practicing some suctioning. After that I headed home to Pop and CCs house, where my absolutely wonderful mother-in-law fed Owen and me dinner. Then Owen and I took a walk, skyped Daniel and Evs, and he's just gone to bed. Tomorrow I will take Owen to school, then head to the hospital to stay for the day and night.

To be completely honest, this is already getting old, so I have great sympathy for those who've done marathon hospital stays routinely, or even semi-frequently. It is no fun. It is also interesting how much our mood depends upon the moods of our children. For better or worse when they're happy so are we, and when they're not - we're not either.

Today Evelyn was completely weaned off of the sedatives, but given she'd been on them for a few days, and given she's needed a little extra help due to seizure activity, she was still asleep all day today. On the upside, she is beginning to wean off of the ventilator, and the respiratory therapist described her progress as 'excellent' and 'beautiful'. As of 5pm when I left the hospital, the vent was giving her 10 breaths per minute and she was taking an additional 10 on her own. Since the ventilator measures such things, we also know that the breaths she is taking on her own are good strong ones, so that is great news.

I REALLY hope she is awake some tomorrow. Even if she's really grouchy, even if she keeps us hopping all day and night - I'm ready to interact with my daughter, and I'm sure she's ready to move beyond the twilight stage.

A healthy dose of perspective is always readily available at the hospital, and though I've resisted it today (being generally grouchy and self/evelyn-pitying) the truth is that you just can't walk through the hallways without feeling grateful. Grateful for your child's life, grateful for food to eat and a home, grateful for loving and supportive family and friends. Our daughter is surrounded by homemade blankets and special stuffed animals, wears fancy hospital gowns and bows in her hair, and I provide homemade organic food for her - even though she can't taste it - because I feel like its best for her and we can do that. When she needs or wants something, we do it; particularly if it is important for her development. There are families in the hospital who have to share one child's meal tray because there is no money for food. Children who treasure a donated blanket as if it is the most special thing they've ever been given - because it is. Children who are in the hospital because someone in their life, who should have been taking good care of them, hurt them instead. There are parents told every day that their child is going to heaven instead of coming home with them.

In light of these realities, I've typed myself into a much better mood - I'll take another sleepy day, because its another day with Evelyn, and its a step toward a better life for her.

As always, thanks for reading the lengthy ramblings, and for your continued prayers. Also, if you ever have extra money you don't have a place for (wouldn't that be nice! :) ) consider donating to Children's Healthcare of Atlanta at Scottish Rite http://www.choa.org/Support-Childrens/Give-to-Childrens . It is a very special place, doing amazing things for our daughter and so many others.

Love,
Kim

Yet another quiet day - for the most part.

Today was probably Evelyn's most restful day thus far. She didn't have many seizures, and just generally rested really peacefully. The only break from that quiet was the 'first trach change' - which went very well. The surgeon felt that the surgical site (aka stoma, aka hole in Evelyn's windpipe) looked just as it should, and the whole process of changing trachs took less than one minute total. After the trach change was over, Evelyn settled right down and went back to sleep. At that point we were officially able to start weaning the sedation, and we were put on the transfer list to move to the TICU. (a cozier section of the hospital)

Honestly, the more I learn the more similarities I see between a trach and a g-tube (feeding tube). Neither device is terribly complicated, and while both provide very valuable and in fact life saving services to my daughter - I think I could probably teach a second grader to properly care for both. Not that I would do that - but suffice it to say that we feel optimistic that we will pass our training.

I think because the trach is revealing itself to be such a simple device, it makes me a little sad that I viewed (and people with them) with such trepidation. It was never a hard decision to do for Evelyn what she needed; including getting a trach - but it was hard to imagine her having one, and the stares and lack of understanding that that would add on top of her wheelchair, feeding tube and obvious physical limitations.

I'm so glad that we've been blogging through all of this, because I don't want anyone that is a part of our life to feel like they're 'in the dark' about who Evelyn really is. I also don't want anyone to feel like they can't talk to us about this stuff, or that they can't ask questions. I thought trachs were scary, because I didn't understand how they worked or how to manage/care for them. They aren't scary to me anymore - though I respect the fact that your airway is a pretty critical area, and plan to ask as many questions and be as hands on as possible in the hospital so that I feel comfortable once we go home - I don't feel intimidated by trachs anymore. I hope that this blog will help eliminate some of the intimidation that some people feel when facing children or adults like Evelyn.

Tomorrow we will probably see a slightly dopey, slightly grumpy, slightly sleepy Evelyn. If she's occasionally also sneezy, bashful and happy then we will have covered most of the seven dwarves... :)