Memorial Day

Grace hopes you all had a great Memorial Day weekend. The buzz here in Indianapolis is the Indy 500 as usual. Grace isn't in to racing, but she is getting in to daily walks in her stroller. We are trying to venture out more and are getting used to loading up the stroller and taking Gracie and Mac for a walk. We know that Mac loves his walks, but the jury is still out on Grace. There were lots of frowns and confused looks on the last walk, along with some drooling, but she will get used to it.

We are now working on Grace spending a little time off the ventilator each day. Seems to tolerate it well for the few minutes we are allowed each day. She is also taking about half of her feeds orally now. Deb introduced some peas this weekend. Grace actually ate some of it, although a good portion was smeared across her clothes as well. She is starting to do many of the things a baby should do. There is some cooing, there is fussing (apparently at nothing most of the time), and she is enjoying her baths. Grace is apparently tone deaf, since she enjoys it when we sing to her. Neither Deb nor I can carry a tune unfortunately. Most precious of all though are her smiles.

Uncle Hamish

Grace had a visit from her Uncle Hamish this weekend. We think she has a little crush on him. She will sit with him and take her entire bottle when she feeds. For us she only takes about a half a bottle before she gets bored. Hamish was also a third set of hands when we took Grace on her first outing. We went to the Broad Ripple Arts Fair. Grace seemed to enjoy herself, and we only stressed out a little bit. We need to do more outings with her so that we can get more efficient at transporting all her gear. Luckily we didn't forget anything crucial and there only a few melt-downs along the way (mostly me).

On the down side, Anthem has denied our home nursing help. This is a huge problem, so now we are going to have to appeal. Puts a lot of stress on Deb in particular. Have I mentioned how much I hate insurance companies.

Working Hard

Grace's uti seems to be better. We finished up the antibiotics and the apnea episodes seem to have decreased. Grace is growing like a weed and is still smiling for us. This is an event that brings a disproportionate amount of joy to us for some reason. We have developed a little bit of a routine with her now and have had a little more night nursing help. This is a boon to both of us, particularly Deb who gets the brunt of the sleepless nights.
Dad had a 24 hour flu this week. Although Mom quarantined him from Grace for a day, we are still praying that she won't get it. There always seem to be plenty of things to worry about with this young lady.

Happy Mother's Day

Join Grace and me in wishing Deb a very happy and well-deserved Mother's Day. Grace feels she is so lucky to have a great Mommy who takes such good care of her.
Deb and I are also lucky to have fantastic mothers who have been great role models and we are thankful for them every day, but particularly today. So blessings to all you moms out there. We wouldn't be who and where we are without you.

Back to the Doc!

But not in the hospital. Grace and Deb have spent some time in Riley this week. Fortunately all outpatient visits. Grace has been a little flat lately so we were worried she might have an infection. After chest x-ray, blood work etc, it appears that she has a UTI. Hopefully the antibiotics will take care of it and she will perk up a little. She also saw the urologist and had her first renal ultrasound. You will recall that with Beckwith-Weidemann she has to have an ultrasound every three months to screen for Wilm's tumors. No sign of a tumor. One down....
At home she is a joy, although she is a lot of work. Her busy little hands yank her NG out several times a day. We are constantly putting it back in, just to have her hook a little thumb under it and whisk it out again. Eating does not seem to be a problem. She does better with the bottle now, although we are still a long way from getting the NG out. She is gaining weight just fine though. Weighed 18 1/2 pounds this week at the doctor!

Anger

Our friend Hope came home from the hospital last week. Unfortunately she is having some trouble and may have to go back in to have a chest tube put it. I know this from reading Hope's Journal on the hospital website. Hope's parents are lovely people, but while reading some of the entries I can easily pick up the anger that lies beneath. As I look back through our own posts I can quite easily find that current of anger as well. There is no question that it would make anybody angry to watch their child suffer. But how useful is that emotion to us in coping? If anything it tied us in knots, made us short-tempered, and increased the stress in our lives. We would snap at a moment's provocation. I am pleased to say that we are less angry now. Truthfully we are just very tired. Deb in particular is up most nights with alarms. Grace occasionally falls into such a deep sleep that her breaths become so shallow that the monitors won't pick them up. Very scary. Not sleep inducive.
On Monday we had all kinds of problems until Deb figured out that Grace had plugged her trach with mucus (I know, sounds gross). A quick trach change solved the problem. We are learning to manage this little girl, but it is not easy. I am just glad we have moved on from the anger stage into a more constructive phase. We sincerely wish that things improve for our little friend Hope so that her parents can also get some relief. Being angry is exhausting, but watching your child hurt is just cruel.