By Popular Request
Friday, June 26, 2009
Grace watching Barney - sigh.
Pretty as a picture!
With Paddington - thanks Sheila and Steve!
Mommy
Father's Day
She Loves Uncle Hamish - but then all the girls do!
Not so happy about sharing a blanket with Mac.Hapyy Father's Day
Monday, June 22, 2009
Grace hopes that everyone had a great Father's Day weekend. I know that I enjoyed my first ever Father's Day. It is an honor being Grace's Dad. Despite her issues she is a joy to have around. It is funny what we can accept as "normal", but she seems just like a regular kid to us.
She has been behaving well this weekend with lots of smiles for her Dad. Each day she makes little improvements, including some attempts to roll over and sit-up. We even get some cooing, which is particularly hard for her to do with the vent, but she makes herself heard. We are so lucky to have her in our lives.
She has been behaving well this weekend with lots of smiles for her Dad. Each day she makes little improvements, including some attempts to roll over and sit-up. We even get some cooing, which is particularly hard for her to do with the vent, but she makes herself heard. We are so lucky to have her in our lives.
I Know, I Know . . .
Monday, June 15, 2009
Yes, I am a terrible Dad for not updating the blog sooner. Complaints have been filed and I will probably be reprimanded. However, the old axiom that "no news is good news" holds true. In fact it just means that since Grace has been home, Deb and I have not stopped and I have been too exhausted or busy to sit down and do the blog. That's my story anyway.
Grace has been doing much better since she has been home from the hospital. We made an executive decision to stop using the naso-gastric tube for her feeds last week. Grace pulled the dang thing out daily and we were tired of torturing her putting it back in. She has been doing fantastically well without it to date. She will be weighed this week, so hopefully she will still be gaining weight at an appropriate rate. If not, the ng goes back in.
The feeds are even more time intensive now that we have to give her a whole bottle - it takes her 30 to 40 minutes. Fortunately we had help this weekend since my Dad and Step Mom were in town for a weekend visit (pictures to follow). My Step Mom was a huge help and took over much of the feeding for the weekend - not reluctantly I might add. Grace went with us to the Talbot Street Art Fair and seemed to enjoy herself. W are proud of ourselves when we take her somewhere. It truly is a major hassle getting everything together and out the door, but we do it. It would be so much easier just to stay home, but we would go crazy if we couldn't get out of the house. Thus, we make the effort, and it is worth it. Grace has also been to the Broad Ripple Art Fair, and to Clay Terrace twice for shopping and dinner. More to follow.
Our nursing situation is improving. Still woefully short of what we need. Deb and I are still sleep-deprived but improving.
Grace has been doing much better since she has been home from the hospital. We made an executive decision to stop using the naso-gastric tube for her feeds last week. Grace pulled the dang thing out daily and we were tired of torturing her putting it back in. She has been doing fantastically well without it to date. She will be weighed this week, so hopefully she will still be gaining weight at an appropriate rate. If not, the ng goes back in.
The feeds are even more time intensive now that we have to give her a whole bottle - it takes her 30 to 40 minutes. Fortunately we had help this weekend since my Dad and Step Mom were in town for a weekend visit (pictures to follow). My Step Mom was a huge help and took over much of the feeding for the weekend - not reluctantly I might add. Grace went with us to the Talbot Street Art Fair and seemed to enjoy herself. W are proud of ourselves when we take her somewhere. It truly is a major hassle getting everything together and out the door, but we do it. It would be so much easier just to stay home, but we would go crazy if we couldn't get out of the house. Thus, we make the effort, and it is worth it. Grace has also been to the Broad Ripple Art Fair, and to Clay Terrace twice for shopping and dinner. More to follow.
Our nursing situation is improving. Still woefully short of what we need. Deb and I are still sleep-deprived but improving.
We're Home!
Friday, June 5, 2009
Grace was discharged yesterday. We are thrilled to be home with our little girl.
Our experience with Riley was not the greatest this time. Usually they are pretty good. This visit, the work-up for her fever was a bit of a cluster****, and things seemed to get missed, forgotten or just not done. Despite all this, her fevers have subsided and she is home and on antibiotics for the next week. It is presumed that she had urosepsis since she did have a positive urinalysis. Due to the aforementioned activities she did not get a culture result to confirm this. Now at homesShe is more like her old self again with lots of smiles for her Dad - that's all it take to me me happy.
Our experience with Riley was not the greatest this time. Usually they are pretty good. This visit, the work-up for her fever was a bit of a cluster****, and things seemed to get missed, forgotten or just not done. Despite all this, her fevers have subsided and she is home and on antibiotics for the next week. It is presumed that she had urosepsis since she did have a positive urinalysis. Due to the aforementioned activities she did not get a culture result to confirm this. Now at homesShe is more like her old self again with lots of smiles for her Dad - that's all it take to me me happy.
Wednesday, June 3, 2009
Here's Gracie having a laugh with her great grandmother Margie over the weekend. Margie must have said something very funny!
On the serious side, Grace seems a little better today. Less feverish and a little more of her old self. However, she has developed some nasty diarrhea that is probably from the antibiotics. If the fevers and diarrhea stay under control, there is a good chance she might come home tomorrow. Fingers-crossed. We still don't have a cause for the fevers though. The current suspect is a UTI.
Back at Riley
Today's post was supposed to be about the great weekend Grace had visiting her family in Ohio. However she started running fevers yesterday and has been readmitted to Riley for a work up. We hate being back in the hospital again. Poor little Grace was stuck six times to get blood and try to get an IV. No luck of course. Then she had to get two big sticks to have her antibiotic intra-muscularly since they couldn't get an IV. Grace handled it all well. A little fussy, but really very tolerant of the whole thing. We are hoping for a VERY short stay.
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