Tuesday, August 30, 2011

weigh in and sippy straw

Ellie weighed in at 15 lbs, 11 ozs. We have 16 days to get to 16 pounds! We can do it! Only ounces to go!

I was also able to get her to drink from a sippy straw for the first time ever! A mom had suggested putting a smoothie in there, and she was right!

Saturday, August 27, 2011

So proud!

Ellie was AMAZING at the party today. She tried to swim by kicking her legs and waving her arms, even splashing. I was so proud! She also played with other babies and adults. She even let a guy hold her for a minute without screaming. She's really become so confident! I really couldn't be more proud.

Friday, August 26, 2011

1 year eye exam

Most mothers of miracle babies will tell you they either (1) found religion or (2) have had a renewed faith in their religion. It's really hard not to when you see a child continuously make strides they were told they wouldn't be able to. When you see a child defy doctors and experts you can't help but be joyous and grateful to whatever is making the child take leaps and bounds. When you witness miracles on a fairly regular basis, you gain faith.

Today was Ellie's one year follow up to her eye exam. My Facebook status last year was: "And we strike out at the ophthalmologists office... at least the diagnoses become less and less serious. She's the slightest bit near-sighted in one eye. Glasses await her in the future." I asked the doctor last year if there was any chance her sight could improve and he gave me a strong no. I thought today would be filled with crying fits and a trip to buy some glasses. I prayed while we waited for the doctor to come see us. He examined her eyes and told us he was positive she would need glasses. Her eyes are perfectly fine! She doesn't even need to return next year. We get to wait until she's 3! Amazing!!!

We are still dealing with... something. I think perhaps a combo of teething and a growth spurt. Her temps are all over the place. She was 100.5 after her bath last night, 97.4 this morning. She gets cranky, whiny, needy. She's eating like a horse. She ate during all of PT so her PT says growth spurt. Her sleep is disrupted frequently. -+23 (Ellie says hi). Her drool has increased, she's biting on everything. Could be both. -*+99/ *(Ok Ellie thank you)

I am concerned about her weight, as always. I put her on a produce scale in the store and it said over 16 pounds. I knew that to be inaccurate so while at the post office I put her on their scale as well. That said 14 lbs 5 ozs. I hope that to be inaccurate. She must be 16 lbs by Sept 15th. I'll be trying to weigh her on Weds the 31.

Friday, August 12, 2011

Food for thought

Every mother asks "why?" when they have a special baby. They want answers. Sometimes it's something easy or logical, like heredity and genetics. Sometimes it's something more esoteric and philosophical like, "Because God chose you." Sometimes it even takes a long time to find out why, like if your baby is special so you can help someone a year or more from now with a special baby. We see this a lot in the PRS support group. So many of us are able to answer questions for new members, or frequent members with new problems. Sometimes, I think, though, it can be more complicated and per chance rewarding. I was devastated in the hospital. I found an old (several years) blog by a mom who blogged about her PRS daughter. I found a link to her new blog, which had a Facebook badge on it. I asked to "friend" her. I couldn't believe that there was a mom, on Facebook, with a daughter with the same disease. In fact, she lived in the same state. In fact, she lived in the same county! What were the odds?!?! I'm sure at the time she asked why, and I'd like to think it was so she could help me so many, many years later. Recently, a friend and neighbor of mine had a baby who has a genetic disorder. She's been distraught and confused. I'd like to think perhaps Ellie was special so I could help her. Perhaps.

Thursday, August 11, 2011


During PT yesterday Ellie took 2 more unassisted steps. I was so excited and proud. I asked the PT what else Ellie needs to learn to walk. Basically, just falling. Well, balance I guess is more appropriate. She has none lol. I asked when we could expect Ellie to start walking. The PT said walking takes the longest to learn as it is one of the hardest skills to master. I was hoping 3 months, she said 6 at the latest. This saddens me. 6 months?? So long. And of course it has to be Ellie's idea. She wont do it just because we ask. She has to believe it's a good idea, and her own.

Monday, August 8, 2011

1 yr stats, xray

She stayed 27.5 inches long. She weighed in at almost exactly 15 lbs, which is good because if we keep the weight gain no feeding tube. She seemed to check out just fine, and is in the normal range for development (no signs of delay or autism). The doctor said he expected her to be delayed b/c of all she had been through, whatever the hell that means. She presumably has low iron b/c he put her on an iron supplement twice a day. Anyway, he ordered an xray of her hips since she was breech and he hadn't ordered one previously. Today we went to our usual place- CHoA Scottish Rite. We got the Xray and I have a bad feeling. The Xray tech asked, twice, which hip I hear pop. She asked, twice, about Ellie being in physical therapy. She said to the tech student, "See on 2? Right there." to which the student replied "yeah I see it." And when I questioned the tech she replied, "I'm just gonna make sure a doctor sees it." So we're waiting for the call back.

Monday, August 1, 2011

Speech Therapy Eval

Ellie's speech therapy evaluation with Dr Riski was fantastic. She has no nasality and her palate seems to be working great. Dr Riski said he thought she had a small palate but I explained that she had one of the largest Dr. Williams had ever seen. He was very impressed with Dr. Williams' work (as am I). In any event, he gave me "Straight A's" on parenting. Ellie's speech is perfect, he wants us to keep reading to her, signing with her, talking to her, etc. He wants a big vocabulary which she will pick up as she ages, along with more verbal sounds (like "d" for dada). When we return in 6 months we will also see the pediatric dentist. She may still need speech therapy between the ages of 3-5 but right now, she's great!