Ruby had her one year check-up with Dr. Dan yesterday. She got 4 shots, which she handled like a champ. We went out for sushi as a treat afterward. Ruby will eat the California rolls. No raw fish for a couple more years.
Her appointment was a long one. We discussed every thing that CHOP suggested. Dr. Dan agrees with me that the Developmental Assessment wasn't really fair and was way too picky. Don't get me wrong we know Ruby is delayed. She's three months behind in her physical developments. She's just now started to pull up. She doesn't seem to have any desire to walk. As we all know Ruby doesn't do something until she's ready. I'm glad to hear that he's not too concerned, yet. He did say that if she's not walking by 18 months he'd be concerned. We've got 6 months to get her going. As a parent I'm feeling much better about her development after talking to Dr. Dan. I'm still not convinced the assessment at CHOP was fair. They didn't really seem to take the fact that she had been sedated the day before, traveled, and her schedule was off. I know I didn't really feel like acting like 33 year old that afternoon.
The most upsetting thing about yesterday's appointment is that Ruby has fallen off the growth curve. We knew this might happen. Her weight gain has slowed since coming off the NG tube at 10 months. She hasn't lost weight. She's just not gaining as well. For now no one seems to concerned and we're doing everything we can to fatten her up. As for the constipation Dr. Dan agrees with me that it's because of the formula switch and not a sign of an intestinal problem. We're hoping to control it by diet. I've switched her to pediasure with fiber. We are pushing prunes and apricots. I made her rice pudding with prunes instead of raisins for breakfast this morning, hopefully she'll like it. I used heavy cream instead of mils and lots of butter. It smelled heavenly. I'm trying to get this all under control before we leave for Oregon next week. We've also been given permission to add Miralax to her diet to help control this. If we haven't seen a improvement tomorrow I'm going to get her GI Dr. involved. Ruby's intestines aren't coiled like everyone else. I don't want to take any chances that this could be something more.
I also need to update everyone on her blood work from CHOP, but it'll make this post way too long. We discussed it with Dr. Dan. He's agreed to order the tests that the CHOP cardiologist needs in a month.
We are going on our first family vacation next week. It's a well deserved and needed trip. It's more of a vacation for Chris and Ruby than for me. I'll be running a marathon the third day we are there. Either way we are looking forward to exploring Oregon with Ruby.
Her are some pictures from our week in Philly. Ben and Nicole made super hero costumes. Ben was the Human Torch and Ruby was his side kick Fireball. Nicole completed the crime fighting trio as Spider Woman. Ruby LOVED playing with Ben and Nicole. it was so cute to see her chase after them. Ben and Nicole were very kind and seemed to enjoy sharing and playing with Ruby. We couldn't have asked for a better family to have befriended. Plus Brad and Diane kept us well fed the whole time. It was so nice to leave CHOP after a long day and be able to sit down and to a good home cooked meal with such a nice welcoming family. Some of the pictures are blurry, it very hard to photograph three very busy kids.
Someday, Holly, I believe
Someday, Holly, I believe the CDH roller coaster will end...probably in about 4 years when our little ones are starting Kindergarten! :) OK, that is my hope anyway! :)
Jaime, is small, too. How much did Ruby weigh? Jaime was 18.2 and 29 in. long. I think our kids are super stars and doing the best they can do. Somedays are much better than others!
We've had our share of pooping issues, too. In fact, I had to give Jaime a dose of MiraLax today. Sometimes it helps, sometimes not...then we take out the big guns...Little Tummies!
Wishing you lots of luck...hoping the cardiac blood work stabilizes. Please know that you're not alone and that we're all here for you....cheering Miss Ruby on!
Hugs,
Sheryl
Hang in there Holly &
Hang in there Holly & Chris...you are doing an AMAZING job with Miss Ruby!!! I always found that there was a big difference between Landon's paediatrician (that sees him regularly) and the Doctors/Surgeons at Sick Kids (that see him quarterly/bi-annually/annually)...they're all amazing, but the ones that see him less frequently nit-pick him apart more (hey, it's their job, I know), whereas his paed is so happy to see how far he's come and that he's making strides in his own time. She's just being Ruby...the miracle that she is...she marches to the beat of her own drum! :) Enjoy your family vacation!!!
Hugs from your Canadian friends :)
Emily is yet another CDHer
Emily is yet another CDHer with pooping issues. Boy is it frustrating! She too has benefited from MiraLax and Little Tummy's laxative drops. It's brown and looks yucky. Em doesn't drink so she gets it via g-tube, so I'm not sure what the taste is like, but it might be something to check into.
As for EI, I'm surprised with there unwillingness to help. Sheryl in Ohio was having a similar problem. I'm in Il and I'm not loving EI, but we did get Emily OT and PT 1x a week (over a year now), and a dietician who comes every other week. We never did get the recommended Developmental Therapy from last July and we are 3 months late on our 6 month evaluation. Also trying to get her SLP at home instead of going to the hospital and trying to get her a social worker, so far no luck. Don't these people realize that there jobs are about HELPING our kids, not brushing them offf or giving us the run around! UGH!!!
Sorry for rambling. Keep calling and maybe you'll get somewhere. Maybe a prescription from her CHOP Drs stating each recommended therapy and the number of times a month/week will help??
Good luck! Ruby is just beautiful and she will progress in her own time!
Sue, Mom to Emily LCDH 1-22-08
That is so nice that you had
That is so nice that you had such great people to stay with. So much better than impersonal hotel or furnished apartment! I love that little Fireball girl. :) It's funny, sometimes you have pictures of her and she looks just like Holly and other times she looks just like Chris. Maybe she just really looks like Rock Star Ruby. Love and hugs from IA.
That is great you are going
That is great you are going on vacation, you need some time away! Good luck on your race!
I know that sometimes those visits to developmental therapists can be scary but they are sometimes very "by the book" and fail to take into consideration others aspects. You know as a mother when something is not right and you will question it. Ruby is an amazing little girl and she will show them up when she is ready!!!!
Glad you had a nice place to stay while in Philly, too bad we live further away. It would have been fun to see the little rock stars play together!!
I hope Ruby's constipation issues resolve.. Gabi has issues with that now and again and it is awful for her!
Take care,
Joanna