Monday, December 15, 2008

Docs and Shots




Well, I'm not sure what it's like where you are, but we are experiencing frigid temperatures and sleet. The sleet ended sometime in the wee hours of the morning, but the frigid temperatures continued throughout the day. We are expected to get 3+ inches of snow later tonight and into tomorrow morning. Needless to say, school was cancelled, so we had all three children home today.

The main roads weren't too bad, so Jon went out for a bit and took Josephine in for her two month well-child visit. Dr. Russell was pleased with her health and current condition. She had lost an ounce of weight. This wasn't much of a surprise to us since she has been vomiting from time to time and had high amounts of residuals a couple of times.

Jon went to the doctor today with a list of things to discuss with him. The first thing was her apnea spells. They've been different as of late, showing signs of possible infant seizures. They tend to happen in clusters; one side seems more affected than the other; and they don't send her into full apnea. She tends to take ragged, random breaths while they happen. While visiting with Dr. Russell, she had one of these spells. He said that they were not seizures, but that infants will sometimes twitch when they hold their breath or stop breathing. Josephine seems to be doing more of the former rather than the latter. Her spells seem more "voluntary," like she's trying to hold her breath, especially since she takes those ragged breaths in the middle. We've still noticed that they are happening just prior to a bowel movement or gas.

Dr. Russell also said her heart murmur is even louder. He said this could have two possible reasons. One, one of the holes in her heart, probably the ASD, is closing. Or two, the blood is being shunted in a loop through the holes in her heart faster and stronger than before. There's really no way to tell without doing another echocardiogram to check out her heart.
And finally, Dr. Russell told us that it looks like Josephine is having some reflux. This would explain the spitting up and vomiting - you know, the things that are very normal for babies. I'd say the most frustrating thing about all of this (and I'm sure I've said it before) is that we're never quite sure what is normal newborn stuff and what is normal caused-by-Trisomy-18 stuff. So we second guess ourselves about EVERYTHING! Her other "normal" development is that she is making eye contact now. That is, when she has control of her eye muscles! ;) She does still do the newborn eye rolls from time to time.

Josephine also had her two month immunizations today. Jon said that she was definitely not happy to be stuck so many times, but forgave them and calmed down quickly. Jon cuddled her tightly and waited a little while to leave. They had asked him to stay for a few minutes to make sure that she didn't have any adverse effects from the shots. The little round Band-Aids they put on her legs almost wrap half way around her thighs. It's too cute.

Jon didn't make a follow-up appointment, but I imagine we'll go back in two to four weeks for another check-up.

I spoke to our social worker from hospice today. She called to ask about how I felt about going back to work. She was unaware that choosing January 5th had been my decision. She also encouraged me to contact the Social Security office to see about getting benefits for Josephine. She's considered disabled, so we should be able to collect. This would definitely help out with Jon not working. Unfortunately, there is little chance of Jon getting a job before the end of the school year unless it's during the evening shift. Josephine needs round the clock care, and Jon, my mom, and I are the only ones who have taken care of her at all. I think it would be more stressful to try to teach someone else to take care of her. And I can only imagine how stressed out they would be!!

On a completely different note, I've changed the setting on posting comments. Many of you have told me that you have wanted to post a comment, but couldn't figure out how. I've opened it so that anyone can post a comment without needing a Google account user name and password. Hopefully, that will help some of you! We definitely love reading what you write to us, too!

7 comments:

kate the great said...

Her little face sure has filled out since I saw her at Thanksgiving! My James loves to look at pictures of her, touching them and saying 'baby' over and over

Jeanne said...

When Kit was about 9 months old he got a series of ear infections which eventually led to tubs in his ears. I totally lost confidence in my diagnosing his ears because he never had the same symptoms as his older siblings. It was crazy for me.

MARIA said...

Hi Clara!
(Clara is my dear mom's name too)

Your little girl is precious and lovely!

She is in my prayers!

God bless!

Maria
from Poland

Anonymous said...

What wonderful news. I'm glad her appt went well. She is absolutely adorable. Lisa L.

The Lawheads said...

I am one of the ones tha couldnt figure out how to remember my password there has been many times that I have wanted to comment but haven because I cant figure it out so thank you from the computer illiterate. Anyways, she is looking good and you guys are such an inspiration to me. I love you guys so much and you are always in my prayers. If you need anything just call

Abby's Mom said...

I have been following your blog for a while. My brother and sister in law to be have just had their 2nd child (still in utero) diagnosed with trisomy 18 as well. We don't know what will happen but she has chosen to carry daughter as long as she is able. I am going to share your blog with them as well. Your courage and faith is both amazing and uplifting! Your daughter is beautiful and you are so very blessed.

Bev Holst said...

Clara I just thougt I would check in and saw that I could leave a note. I pray that you and your family will have a blessed Christmas. I know you treasure every moment you have with her and it will really be hard to return to work, but it does sound like Jon has things under control...take care and may the Lord watch over you and your family. Bev Holst MK