Thursday, July 29, 2010

Recap-Birthday,EEG, and Summer Fun

The birthday party went over without a hitch. Well the weather could have been better but it wasn't raining during the party and people were still able to go for rides on the boat and go swimming. Worst case scenario would have been we were all squished in the house in the rain. So while the sun was not shining it was still pretty fun. I didn't take enough pictures and I wish I had but oh well. We had fun, we smashed cake and Little E turned ONE!
The week after her birthday we went for her 12 month check up. All was great and she weighed in at 20lb 4oz and was 27.5 inches long. She is doing great and it was crazy to find out that she has gained almost 18lbs in one year!
The next day we headed out to Children's Hospital for her 24 hour eeg. It took a while to get up to the floor where we were staying and were further delayed waiting for our room to be opened up. She did great with the set up again and charmed the socks off the women who hooked her up. She was attached to the wall by a long cord and had a little bag to hold the eeg box. She was not phased at all with having 25 leads covered with a long sock thing attached to her head and played happily. She slept ok and I ended up having to get in the crib and sleep with her for much of the night. She had several episodes before she went to bed so they were able to review the eeg in the morning right after rounds and we were released by 11 am. So our 24 hour eeg ended up being more of a 15 hour eeg which was awesome. The best news was that she showed no seizure activity. They described it as non-epileptic head nods, a name I think they may have made up in the hallway before coming in. Anyway they are not concerned at all and the episodes are now rare where we see a few a day but nothing like the 25 or more we were seeing a month ago. Yeah for no seizures!
We have been busy the last few weeks enjoying the summer and have gone swimming in pools, took our first boat ride on the lake, explored the splash park, and other wise where summer slackers. Our little family is definitely enjoying our last (and only) summer with us all at home with no school or work!
We are off to P-town tomorrow for a week. Although we are stopping at Children's for an allergy appointment to rule out (we hope) a legume allergy. Doesn't everyone start their vacation at Children's hospital???? Our doctor wanted us to be tested before trying legumes again. So fingers crossed that peanut butter sandwitches will be in our future. It will stink if it ends up that Little E's hive reation to peas at 7 months is really a peanut allergy like we fear.

Monday, July 12, 2010

How It Should Have Been

Saturday night after the cake was put away and the the last of the guests had left Little E woke up crying. It had been a long day with nothing that counted as a true afternoon nap and it was hot in her room. To settle her back down I laid down on the bed with her for a quick snuggle. She drifted in and out of sleep often turning her head into mine so close our faces touched. Shazam joined us and we lay in the bed together with Little E snuggled between us. We whispered about the day and kissed our dear daughter's head, and face and hands. We admired the amazing creature that is our daughter. Every once and a while her eyes would flutter open and she would smile at us. At some point I realized this is how it should have been. This is what our first night should have been like. This is what I morn. A year ago we should have been snuggled in a hospital bed with Little E between us in awe of her perfection. I didn't get it our first night but I did 365 nights later. I still miss that first night but somehow after all we have been through our time together on her birthday eve may be more precious.

Thursday, July 8, 2010

I am back

Hi People

So I think coming back in a weeks time is not great but better so I am proud of myself. We had a great 4th weekend and we had a wonderful time at the parade and all the festivities. Little E did great and was a trooper. She missed her naps on a couple of days and took it like a champ. Not a crank or whine the whole time. She even slept and Mimi and Bubba's with not one problem. Last year on the fourth I was pregnant and this year I have an almost year old child. It is still hard to get my head around that!
July 4th 2009 July 4th 2010

Our Yankee Doodle!

This week we have been busy getting ready for E's birthday party. Today we worked on favor bags as well as picking up some last minute things. Shazam is out right now getting the helium tank and some other assorted items. Tonight we run to BJ's for the perishable food. Tomorrow we drop the dog at his dog camp, pick up the cake and head up to the lake. The weather forecast is ok. With possible scattered thunder showers. I am hoping for the best and we will make due with what ever weather comes our way. We have about 33 people on the guest list and a house that is not so big so let's hope we don't have too much trouble with the weather. As I mentioned before I went a little crazy with etsy purchases and I think that it all came out so well. Here is a little preview of our stuff.

Invite Favor Bag

Party Sign Birthday Banner

Photo Banner

Today is also an anniversary of sorts. Today marks the day I got sick and went to the hospital. Today was the beginning of the end. I am glad I have distractions from being stressed out about it. But still my mind wanders to those last few blissful hours before I learned the hard way that sometime bad things happen to good people. I started therapy yesterday and that really helped and I think it will be very good for me to process all that went on in my pregnancy, birth and all the rest! E has been doing great which is helping me deal with the emotion of these next few days. She has her 24 hour eeg scheduled for next week, but I will tackle that when after the party.

Thursday, July 1, 2010

Wow it has been a while.

So the theme seems to be, I don't blog, I apologize for not blogging enough, I don't blog and then I apologize for not blogging enough. School is finally over and I was hoping that things would calm down here but things have been crazy and well I have been a bit crazy. No excuse but there it is.

I have been having a really hard time of late. I think I have a touch of post tramatic stress disorder. I say this with a smile on my face since how the heck do you just a touch of that. Anyway, a few weeks ago E started doing this strange thing with her head where she would bob it down. It was really quick, she didn't seem to even notice she was doing it. She could be in mid crawl, sitting and playing or even standing while holding on to something. It actually started a few months ago when she was eating. She would be sitting in her high chair and would do a shiver like thing and bob her head down. It seemed to happen when she was eating something cold it happened so infrequently that we felt it was just a freak thing. Well she started doing it about 25 times a day about 2 weeks ago and I freaked out. Both Shazam and I were very worried but I completly lost it. E of course was her happy self just bobbing her head alot. We made an appointment with her pedi and caught her doing it on video. The pedi was stumped so she started calling neurologists. She was having some trouble getting call backs and they were all booking into the end of July. I was starting to think it might be easier to go to med school and become a neurologist myself. We happened to have lunch with our neonatologist friend who observed the episodes on Friday. She called our pedi and within an hour of her call E had an appointment at Children's Hospital for an eeg and neuro consult on the following Monday. I don't know how it all went down but I am so glad people made things happen.

Monday we went in for the EEG which was not as bad as I thought it might be. I had to pin E down on a bed for about an hour so that the tech could attatch the 20 odd electrodes to her head and face. She cried for a little while but was comforted with a binky and her bunny, bun bun. I think she kind of gave up after a while and knew she was not going to get up so she just laid there and let it happen. I also think she might have liked how it felt to have her hair played with and the feeling of the air that they used to dry the glue. After she was all set up I had to get her to sleep. I didn't know if it was going to happen but I did get her down so that they could record her sleeping. After that we went upstairs to neurology and met with a nurse practitioner and a neurologist. The good news is that they did not see the brain activity that is seen with infantile spasms which was the biggest concern. She didn't have any episodes during the EEG (thanks e!) but we were told that babies with infantile spasms show abnormal brain activity between seizures so the fact that her EEG was normal is a very good indication. They did not think she needed additional imaging (mri or catscan) but she does need to do a 24 hour EEG. She will be admited to the hospital for this. The good news is that we will be able to stay with her during this. So instead of having to leave my beautiful baby in the hospital again we will be able to be with her while she undergoes this test. I hate that she will have to go through this but we need to get to the bottom of this as soon as possible. The neurologist thinks she is having benign myclonus of infancy. Pretty much they don't know what causes them and they go away by age 2 or 3. I hope that is the case. It is going to be very difficult to get our very active 12 month old to keep the eeg leads on her head for 24 hours but I have faith that the people at Children's will know a few tricks.

I think the upcoming anniversay of E's birth and this new health problem has brought up the trama of last summer and has made it clear that I need to process and deal with everything that happened. I know I have tremendous guilt about being the cause of E's prematurity and feel like all that she went through and is going through is my fault. Pretty much I feel like a terrible mom to have put E through all this. I have an appointment with my therapist next week and will be working through all of this and I hope to find to peace and can move on. I also have an appointment to start taking my meds again. I think the two of these things will really help. I have more to say on this but have to run. Hopefully I will have some good news to report soon!