Tuesday, July 28, 2009

Early Intervention Eval x2

This morning early intervention came out for a follow up visit. I have asked that they continue to keep tabs on Lily to ensure that we are not overlooking anything. Her visit went well. We are going to keep a watch on her communication skills. She is not yet saying MaMa, DaDa, GaGa or any of those type of combinations. She is tongue clucking and rolling her tongue around a lot so it could be just around the corner. Her case worker classed her as a "Motor baby." All this means is that she uses her Gross and Fine motor skills to get her needs met. She is so focused on what she wants and is so busy that she is trying to get it or there. She said that this is wonderful but we do not want her to over compensate in one area and lack in another. So, we are going to watch her for the next month or so and see what happens. She is almost due for her 6 month re-eval and we may bump it up sooner and have OT or speech come out and work on this with her. She is also staying on her tippie-toes when put her in the standing position. She is going to call the PT and find out some exercises that we can do with her to encourage her to stand flat footed. So... other than those minor issues.. she is doing great!

Monday, July 27, 2009

Our God is a Wonderful and Glorious God! :D

We just returned from a Great visit with Lil's Neurosurgeon. The CT scan this morning stated that the cyst is still non-existent and her ventricles could be smaller. Her Dr. said that the likelihood of her needing a shunt is slim to none! WOOT! Go Lily! :D We do not have to return until November and he will NOT be doing a CT or Ultrasound! This is the longest we have gone and the first time that he has not ordered a "study!" He said that since her last CT in March she has made millions of gallons of CSF and it is flowing on it's own. He went on to say that if she started to have an issue it would occur gradually over the course of about a week and we'd look for her to be irritable. He is going to have a disc made of all of her current scans and etc. to take with us if and when we go out of town. (Just in case) It should be ready on our next visit. I asked him again if we should be watching to any type of seizure activity and etc. and he said "no." Most likely she would have already developed an issue. Her head circum was unchanged and was @ 44cm. Our family is SOOOOO Grateful that everything has worked out the way it has. This event has changed our lives for the better. It's odd how a tragedy can change everything for the better.

Onto other news... I have been working with Lily on picking up small finger foods. (like puffs) we have been doing this for a couple of days. Yesterday, I decided to video her efforts... would you know she picked them up and put them in her mouth! Show OFF! LOL I'm posting the video today.

She has also been helping out around the house with chores being that her older sister has been out of town.

Wednesday, July 22, 2009

Guess who's 7 months today!?

Can't believe it! I haven't had much computer time here lately.. I hop on my FB account throughout the day but only for a few minutes. Ms. Lily has had me a bit busy the last few days. Teething pain.. still NO teeth!! I suppose she will "grow" them when she is ready. Yesterday she was miserable. It is so hard to see he that way. So gets extremely restless and refuses to take a nap. Yesterday was the first time that I gave her some Motrin. It seemed to help some. She REALLY liked the frozen washcloth that I gave her after her dinner. She got up about 11 pm (she hasn't done this in months!) and was up at 6 am. She has been averaging a 7pm to 7am schedule. She saw a video of a baby crawling the other day and she was MOST interested... I LOVE to see her eyes light up and her get excited. She starts waving her arms an kicking her feet. Here lately she has also been jumping on my lap. :D She sees her Neurosurgeon Monday and will have a CT scan. The last CT she had was this past March. I am going to ask him if I can have copies of her very first CT/MRI and the one that he does on Monday. I'd like to be able to post the images here. The other night I did some reading on Arachnoid Cysts.. now I researched the mess out of her condition when we learned that is what was causing her Hydro. So, now that we are on the other side and I understand things better I wanted to read more about it. The scary part is, it could return at anytime.. or not. :/ In most cases people can live their entire lives and never know that they have one... Hers was causing an obstruction. We are So grateful that she is doing so well. Never for a moment do we take that for granted! God has been so good to us! I do have a few questions that I want to ask on Monday. We have noticed some staring spells.. This mostly happens when she is tired. I want to make sure that we are not missing anything.

She is able to sit up unassisted. She is not yet able to get into the sitting position on her own. She is not yet crawling but is trying to get her knees under her and does lift her entire upper body just not together. She is laughing a lot more and I LOVE to hear her squeal in delight. :D Here are some recent photos... I'll post again on Monday after her Dr. appointment.

God Bless..

Saturday, July 11, 2009


I have been trying to get by here for it seems like days now. It's just been very busy. Lily has NOT projectile vomited since I took her to the Dr. (YEAH!!) When she wakes instead of nursing, I have been feeding her cereal with a little bit of fruit mixed in. I also offer her a sippy cup. (w/breast milk.. that she still gets REALLY excited about) I get her dressed and then we nurse for a little bit. I am guessing that she may have been experiencing some reflux. (?) everything else seems to be going well. She is still teething and has been napping much less. Today we struggled to get past the 45 minute mark and tonight she was screaming exhausted. Poor thing. When she gets like that she hits and kicks me or anything that she is able to.

She is sitting up more and more... She has also started looking up over her bumper pad when she is on her tummy. It is SOOOO cute. She reminds us of a little periscope. LOL

Here are a couple recent photos... The one was sheer luck! :D

Wednesday, July 1, 2009


I took Lily to see her Pediatrician yesterday afternoon. She weighed in at 15lbs and 3 oz. (about the 25th percentile) She was 27 inches long! (90th percentile) We do believe that she is going to be tall. Her head circum was 43.5 but they took 44 from the Neurosurgeon. (about the 90th percentile) So, she is "lanky and lean." LOL We discussed her milestones and any issues that I have noticed. She has been projectile vomiting for about the last month or so. It happens about once a week... usually during her morning feed/nurse. I mentioned this to her Neurosurgeon and he said no way that it is related to the Hydro. Of course her Pediatrician is cautious about that. So, I am going to keep it in a log to see if we can figure out why it it happening. I have thought maybe my milk flow is just to strong for her. So, I tried pumping before her first feed... didn't work. I thought maybe it was a bit of reflux, and gave her her cereal first... nope that didn't work. So, maybe she is just sooooo hungry that she is over eating??? We also talked about the amount of naps and nap time. She can typically only stay awake for about an hour to an hour and a half before needing a nap. She doesn't really get cranky but she will over stimulate and then NOT nap the rest of the day. She said that she'd like to see her stamina be a little longer. At 6 months she should be awake more. She wants me to log this as well. She did go onto say that she is considered "Advanced" for the milestones that she has currently reached. She also asked me if anyone ever said anything about her head size.. like our friends, strangers and etc. I said only the fact that she looks 100% normal. She said that she;d have to agree with that statement. That if she didn't know her dx she would never know by looking at her. She did say that the one side of her head it a tad bit elongated. She kept saying how amazing she is. :D :D She said that we will continue to watch for her milestones as the years pass....

Ken and I are SO thankful for the many..many prayers that have been prayed for our family and for Lily! She is such a miracle.. from her conception right on through... She is proof that God works in our lives everyday!