Neurologist visit

We enjoyed Claire's birthday with family this past weekend. She thouroughly entertained everyone and vice-versa.

Since we stopped the Dermasooth steroid oil treatment.... Claire's skin has been inflamed and bumpy (tiny redish dots) on arms and legs and behind the ears. She has been scratching some. We are using some over the counter hydrocortisone to try to keep it under control. She had one bad night but last night she only woke up once while we were sleeping.

We had a good visit with the neurologist today. She said that Claire seems like a normal 10 month old (Her adjusted age.) Claire was very smiley and social during the visit and had fun playing with the crinkly bed cover paper. We will go for an MRI in the next few weeks just to check out the resolution of the brain bleed.

Tomorrow we go to the pediatrician for 12 month shots and check up.

I haven't pumped since Sat. I'm sad about not giving Claire any more milk.

The End of the Machine

parting is such sweet sorrow...
I'm pumping just once in 24 hours now. A couple months ago I thought I'd wrap it up around Pascha but I decided to continue till Claire's B-day. I sure have learned a lot from the experience, but it's not one I would care to repeat.

I missed Claire's dermatologist appt yesterday because I thought it was today. UGHHHH! Unfortunately the doctor is only in the office on Wednesdays and I couldn't get another appt. till July. I'm tapering off her meds. I didn't use any this evening... we'll see how she does.

I gotta go to bed. I don't know if I'll be able to sleep because I got the wrong coffee at the Ragazzi Room this afternoon...I feel the jitters so I know it was caffinated.

Cheerios

Claire has a one track mind when it comes to solid food these days. I offer chunks of banana, avocado, zucchini and pureed mixed veggies and the only thing she's interested in is Cheerios!

It has been nice having less interruptions to our sleep during the night. Now I just need to start going to bed earlier. Claire was eating around 10:30-11pm but now she doesn't get up to eat till 12:30 or 1. I got used to staying up till the 10:30 meal though. (Or else I would go to bed around 10 and still be awake when she got up anyway.)

--Jen

Update

Claire has had a good week. She still coughs occasionally but doesn't sound congested like she did. Tomorrow morning she will recieve her last dose of antibiotics. We have been giving her probiotics in between antibiotic doses to re-populate her insides with the beneficial bacteria.

She had a mini skin flare-up today so I bathed her a few hours early and did her steriod oil/moisturizing routine. Her skin was already looking better before she went to bed. Yesterday she had an itchy chin and rubbed it raw during a nap. i think she might be sensitive to peas and lentils... I have stopped giving her peas but I gave her lentils for the first time and it seemed to make her itchy around the mouth.

Her sleep has been better for the most part with longer naps and longer stints between night wakings. Some nights she only wakes up twice. I have been able to have a little time to myself during some of her naps since I no longer so desperate for sleep that I feel the need to lie down each time Claire naps. I've been working on clearing off the dining room table which had been covered for several months with paperwork and a random assortment of other items.

The next couple of weeks will be busy for us traveling to various Doctor's offices including: Dermatologist May 24, Neurologist May 29, pediatrician for shots May 30. Her next Cardiologist visit isn't till August.

Claire was evaluated by an Ocupational therapist this week and will recieve OT twice a week. This will mean 5 visits a week from various therapists. Whew!

Progress

Claire had a follow-up visit with the pediatrician yesterday and he thinks she is doing well. She just has a bit of residual congestion and he says it is good that she is coughing to eliminate it.

She had Physical Therapy today and was able to work with the therapist the entire time (60 mins). Lately she would have an itchy fit halfway into it, so this was great.

Claire wore a short-sleved bodysuit for a while this afternoon and did not scratch her arms and legs. She has been in long panst and long sleves for months because having her skin exposed was very uncomfortable for her and would lead to lots of scratching (Escecially during diaper/clothes changes. Diaper changing is back to normal and it looks like she will be able to wear clothes appropriate for the warmer weather.

See new photos on Flikr.

On a serious note...
We were saddened to learn Sunday morning that our beloved priest and father in Christ, Father Michael Trigg passed away on Saturday.

Home again

We are grateful for the help of the doctors and nurses at Children's Hospital. Claire is home again and feeling chipper. She still has a cough and little wheasiness but other than that she is back to her usual happy self as evidenced by her babbling and smiling.
I'm looking forward to sleeping in my own bed. I think I'll go nap right now since Claire just went to sleep.

Thanks for all your prayers.

pneumonia

Jen had the wisdom to call the cardiologist, Dr. Burke, who listened to Claire's breathing over speakerphone and said, "Sounds like she might have pneumonia--better check her into the emergency room at Children's Hospital." So we packed a bag and drove up. Somehow, a sense of calm enveloped us, in contrast to the previous 24 hours of worry. CHLA processed us very efficiently, and everyone was quite nice as well. The nurses were even equipped with soap-bubbles to blow for Claire's entertainment. I think it helped me too. Claire's frightened reaction the first time they put a stethascope on her almost made me cry as memories of the NICU came flooding back. I've heard that babies can develope "tube aversion" from early traumatic experiences. But we all calmed down soon enough. We are very thankful that Claire's first year has been so healthy, with doctor visits mainly being routine checkups up till now. The chest x-rays confirmed the pneumonia diagnosis, but I guess we caught it fairly early. Jen is spending the night with Claire in the hospital. We don't know how long she'll be in. Thanks for your prayers.

one step forward...

Please pray for Claire (and Jen). Claire's cough, which we presumed to be from the teething-drool, got worse on Monday, and her breathing became labored and she developed a fever. Jen took her into the doctor who said she had an infection and prescribed an antibiotic and cough syrup. Problem is, the antibiotic (azithromycin) tastes so bad, we are having a very difficult time getting Claire to take it. Eventually we got about half a dose into her, but it made her wretch and she lost her lunch. Now we are worried she may be getting dehydrated, especially since it was such hot weather today. Mom is exhausted and we are both worried.

Things to be thankful for: I am glad we happened to install the window air-conditioner last month when my Dad was here to help. I am also thankful that Claire's skin has calmed down and not as itchy as before. I am also thankful for my new job, though insurance benefits don't kick in until later this month.

--Mark

Changes

One change for the better since Claire got the new meds for her skin is improved sleep. In spite of her teething, Claire only woke up twice last night! Her second tooth broke through the gum this afternoon. She is a bit congested and and drooly and coughing but it doesn't seem to be bothering her much. (She exhibited the same symptoms with the first tooth.) She has been very cheerful and napped well in spite of being away from home most of the day.

Her naptime sleep is improving too. She used to take four 30 minute naps. Lately she has been taking two 75 minute naps and one 30 min nap.

Claire is obviously way more comfortable. She will hug me and cling a little when I pick her up instead of rubbing her face against my shirt to scratch. She will sit still (or fairly still) on my lap and "talk" to me or take a bottle instead of writhing aroud and scratching her ankles together and trying to scratch her wrists etc. She must be burning way less calories... she seems to be eating a bit less too. She still likes to grab and interact with my hair when I pick her up first thing in the morning before I've put my hair up and she loves to try and grab my glasses.

Last week, she could hardly stand being in the Ergo baby carrier unless we were able to get her to fall asleep in it. (This included scratching her arms against the straps and crying). Today she spent hours in it and was completely happy. I had it on my left hip and it way quite comfortable. My only regret is that I didn't change hips part way through the day. My body is fatigued because I'm not used to carying that much extra weight for that many hours. I think I will be less tired as I get used to using it. (As aside...when I went to Walgreens to pick up Claire's prescriptions, I forgot to bring any carrier and was holding Claire in my arms as I waited in line twice. I could barely hang on to her...she was so squirmy. I was exhausted by the time I got home.

Another wonderful change is that she is happy playing on her own and doesn't require constant vigilance to prevent her from damaging her skin.

Also regarding sleep, she was able to fall asleep in my arms and remain asleep when transfered to her bed without being swaddled first. We have beed doing supper-duper swaddling for over a month because if her hands were free she would scratch and not be able to fall asleep. She still rubs her eyes and scratches behind her ears a bit and rubs her face against me when she is tired, but this is vary minor compared with her previous struggles.

Thanks be to God. I am so grateful for all the positive changes. Our quality of life has drastically improved.

Still hoping for the following... that Claire will be able to be in the carseat without rubbing the back of her hands and wrists against the straps and clasps. We currently put a couple layers of socks on her hands and cloth diaper around the straps but it is still a challenge to keep her distracted. Sometimes I have to hold her hands (I sit in the back with her while Mark drives.) I also have a more frivolous hope...but also practical considering the coming summer weather (and present 90 degree weather)... I want her to be able to wear short sleves and short pants without scracthing.

Also...we continue to pray that she will not requre heart surgery to correct her heart defect... that the Great Physician will heal her.

dermatologist

We had a quiet ride to the dermatologist and back. The doctor prescribed 3 things for Claire including an oil with a mild sterioid in it. Claire is feeling better already and slept much better last night. She was also able to tolerate a long walk in the Ergo baby carrier which was not possible the last week or so because she would get too itchy and agitated. Claire was also able to have a few little sessions of playing on her own today. Recently she has required constant attention and distraction in order to keep her from scratching. Today was so much better in every way! I am really grateful and hopeful.

More new photos on Flikr; look for May3-07 tag.