The Peanut Gallery

Sunday, January 25, 2009

Seizures

Sunday, January 25, 2009
So, we have had quite an interesting weekend!! Kennedy has begun to have, what we think are seizures. We called the on call peds neurologist and he said what I was describing sounded like partial seizures or focal seizures. He directed us to begin Kennedy on her Phenobarbital again :(
What happens is she will be just fine and then all of a sudden her eyes will go upwards, she will kink her neck to one side and she will push out the bottom of her jaw. She will do this consecutively for about five to ten minutes.

So Saturday morning we began the Pheno, however, Kennedy continued to have seizures. Since Saturday morning she has had seven seizures - the Pheno doesn't seem to be working. The only thing it is good for is making Kennedy sleep! I hate this medication!!!

Hopefully, we can get the Neurologist to see Kennedy on Monday. I don't want her to be on that Pheno any longer then she needs to be. I also want to know exactly what is going on. Brian and I have made an executive decision, we are giving these doctors at Loma Linda a couple more months to figure out what is wrong with our little girl and then we are off. We are going to take her to Baltimore, to the John Hopkins Hospital. It is supposed to be the best hospital in the U.S. for Pediatric Neurology. I am sick of being jerked around and not getting any answers. I have been patient for over five months and it has not gotten me anywhere.

Anyways, I have included the video of Kennedy's seizures to see what people think. I am hoping by having these episodes on video the doctors will be able to help us better. If anyone has seen these before, please let me know. Are these seizures......who knows!


video

Sunday, January 18, 2009

The Mystery Continues.....

Sunday, January 18, 2009
Just a quick update on Kennedy's Upper Respiratory Infection.....Her cough is finally gone and for the most part she sounds pretty clear. Her nose is still a little nasally, however, we were able to avoid any fever and the onset of pneumonia - Thank God!!!

Last Wednesday Kennedy had one of her monthly specialist appointments with her Nephrologist (Kidney Doctor). The goal per our last appointment was to try to start weaning her from her two blood pressure medications. I was thinking that this was really going to come to fruition because when we were in the ER Kennedy had the best blood pressure reading ever: 74/52, however, my hopes were quickly destroyed once the nurse took her blood pressure. Her blood pressure was 136/64 - WHAT!!!! How in the world could we go from a completely normal blood pressure last week to a blood pressure that was too high. I asked the nurse to retake her blood pressure to ensure the cuff was on correctly. Lets just say we all ignored what the second blood pressure reading was: 165/69.

The doctor came in and was very perplexed as to why this was all occurring. Kennedy's blood pressure is all over the map. It seems like her medication is working sometimes and other times it is not doing a darn thing. The good thing is per her EKG her heart does not show any signs of thickening, which is great, however, this also adds another layer of complexity to Kennedy's already complicated story.

Her doctor thinks that maybe something is going on hormonally or with her adrenal glands. But was had two ultrasounds of her Kidney's and adrenal glands and everything came back normal - What a surprise!!! I just don't F'n get it! How can Kennedy be so complicated that these highly educated over paid doctors can't find on damn thing wrong with her. I mean hell her cerebellum took two MRI's before she was even diagnosed with having cerebellar hypoplasia.

So the game plan is to wait and see what our next month appointment shows. If her blood pressure is still elevated we will be doing some hormone related tests. Also, her Nephrologist is going to consult with her Neurologist to see if her cerebellum could be causing her unexplained high blood pressure.

Well.....I just wanted to vent. Next month is a big month for us. Kennedy will get her second MRI and have her peg tube changed to a Mickey Button.

Hope everyone had a good weekend - I will post tomorrow and let everyone know how my first day back to work was.

Monday, January 12, 2009

Pictures, Pictures, and more Pictures


(Above: This is one of Kennedy's Christmas Card Pictures.)




(Above: Bath time - Kennedy's favorite time of the day!)



(Above: Showing off her baby blues)



(Above: Kennedy using her new froggy that she got for X-mas - it really keeps her warm in the bath)

(Above: looking at Christmas lights up the street)


(Above: Kennedy all bundled up ready to look at some Christmas Lights)


(Above: Right after Kennedy got her picture taken with Santa Claus)

(Above: Kennedy and her cousin Brennen)



(Above: Kennedy with her sock puppet from her Aunts back East)



(Above: Kennedy and Daddy relaxing after opening up presents X-mas morning)


(Above: Awesome Alex opening up her present from her Super Secret Santa Brian)


(Above: Kennedy's cousin Ashlynn)



(Above: Kennedy and Grandma)


(Above: We have a new Sheriff in town - thanks Uncle Vincent)
(Above: Kennedy playing with all of her toys from Christmas)


(Above: Gosh this is easy! Kennedy and her cousin Ashlyn)


(Above: Trying to get Kennedy to take her milk from a sippy cup - she seemed to do pretty good)



(Above: Kennedy is ready to ring in her first new year)

(Above: Daddy and Kennedy waiting for the clock to strike midnight)



(Above: Happy New Year!!!!!)



(Above: Daddy and Kennedy relaxing after a long long day in the ER)

Sunday, January 11, 2009

2009

Sunday, January 11, 2009
I know, I know......It has been forever since I updated my blog. But life around the Bonomo household has been super hectic!!! Kennedy has been a handful. We have had a lot of doctors appointments, we are weaning Kennedy off her Phenobarbital (which has been an adventure I wish to never embark on again) and to top it off Kennedy has been fighting a really bad upper respiratory infection (URI) for the past two weeks, thank goodness it has not progressed to pneumonia.

Lets go back to 2008. Kennedy had her follow up appointment with her Neurologist Dr. Michelson during the second week of December. All in all it was a good appointment. Dr. Michelson felt that Kennedy was not digressing, therefore, ruling out a plethora of tests he wanted to order. She had not technically advanced or reached any milestones but she was not digressing. So as of now that rules out alot of terminal diseases. I explained to Dr. Michelson my concern of Kennedy's excessive sleeping. She was sleeping 22 hours a day - literally!! I told him that with her neurological problems and other issues I didn't think that this was very productive. I told him that I wanted to see if we could wean her off her Phenobarbital seeing as she has never had a visible seizure. He agreed that the benefits of the Phenobarbital no longer out weighted the side effects it was having on her. He explained that we would be dealing with a baby that would be having extreme withdrawals and boy was he right. It will take us 5 weeks to completely wean Kennedy of this medication. In addition, Dr. Michelson wants Kennedy to get another MRI/MRS. He explained that there has been enough time that has elapsed that will show if there are any changes taking place in Kennedy's brain. We will see if all her mylin (white matter) has developed, we will also see if her brain is still at the same size as it was two months ago. The only downside to getting the MRI/MRS is that Kennedy has to be placed under local anesthetic. Due to her history and breathing issues no one is comfortable administering sedation medication to Kennedy without having her intubated :( Kennedy should be having her MRI at the end of January or beginning of February. I will keep everyone posted as to what the findings were and to how Kennedy held up.

Kennedy also had her 4 month well baby check-up. My cousin Ali spent the night so she could come with me. It is so nice to have someone come with you when you have to take Kennedy on an outing. She requires so much stuff that it is hard to manage everything by yourself. It was kind of depressing filing out the information about Kennedy. It is weird, but when I am at home with Kennedy I don't notice how behind or different she is. But once you get out or are around babies Kennedy's age it becomes quite apparent how behind Kennedy is. I had to fill out a development section regarding Kennedy and every question I had to answer NO too! Kennedy still does not hold her head up, Kennedy does not social smile or smile at all for that matter, she does not roll over, and she does not eat food via mouth. We also found out that Kennedy is very behind according to the state wide standards. But geeze they don't take into Kennedy's special circumstances into account, such as she was 4 weeks premature and she was in a coma for almost three weeks. With that being said Kennedy was in the 5 percentile for her height (22 1/2 inches) and she was not even on the chart for her weight (11 lbs 7 ounces). Kennedy is still breastfed, so Dr. Jeng suggested adding another teaspoon of her high concentrated formula to her breastmilk. And no visit to the doctors wouldn't be the same without some sort of pain. Kennedy had to get all her shots, in addition, she received her third dose of synagis (the shot to help fight off RSV). Kennedy did great with the shots though. She did not flinch until the medicine was actually injected.

Now on to a more lighter subject. Kennedy's first Christmas!!! It was a blast. I think Kennedy received the most gifts out of anyone in the family. We spent X-mas Eve with my Mimi and the entire family. It was the first Christmas in Mimi's new house. It felt like we have always had Christmas in this house. Kennedy came dressed in her Santa outfit that mimi got her. Christmas morning Brian got up early and took care of Kennedy's 5:30 a.m. meds and her 6:00 a.m feeding and let me sleep in. While Kennedy and I were sleeping Brian started a fire for us to open our presents up by. We had a great first Christmas together as a family. Mommy got her UGG boots that she was waiting for (thanks Daddy)! After presents we all got showered and got ready to head off to Brian's brothers house for Christmas Dinner. I had Kennedy all dressed up with a cute jacket on, however, was forced to take it off upon walking into Greg's house due to Kennedy's excessive sweating (withdrawal syndrome). It was nice because Brian's parents were able to come down from Colorado to celebrate Kennedy's first Christmas.

We also had a really good New Years Eve. Kennedy got to celebrate her first New Years with her Godparents!!! We went to our favorite Mexican food restaurant and then headed to Spencer and Sarah's to ring in the new year. We hung out outside under the heatlamps. Kennedy was such a trooper she was not fussy at all. She was lovin' all the attention from everyone. She had such a good night that she rang in the 2009 with her Mommy and Daddy.

So now that I have caught everyone up to 2009........the first two weeks have been stressful to say the least. I am really bummed that I have to go back to work on Monday, January, 19th (I just want to be home with my daughter, I know her the best and I know what she needs when she needs it). It has been four weeks since we started weaning Kennedy off her med and I would have thought that Kennedy's withdrawals would have subsided by now, but no luck on that one. She still is very fussy three days after we lower her dose and still experiences extreme cold sweats. However, the good news is that Kennedy is now alot more awake and alert. I had no idea what a strong medication that Phenobarbital was.

I can't believe Kennedy has come down with a severe Upper Respiratory Infection. We took her to the ER where she was administered several breathing treatments and was hooked up to her favorite monitors. It was a little disconcerning because Kennedy was sating at 94 most of the time. The doctors did not want to admit Kennedy (thank god) but I needed to follow up with her pediatrician the next day. Dr. Jeng told me that her X-ray showed that small parts of Kennedy's lungs have collapsed, however, since she did not have a fever and the mucus that was suctioned from her lungs was not green we did not need to worry. He wrote me a precautionary prescription for amoxicillian in case Kennedy broke a fever. This would eliminate a trip to the loma linda ER - thanks Dr. Jeng, you are a lifesaver.

Kennedy is still sick, hopefully this will pass soon! Tomorrow we have a three people from the Regional Center (a therapist, teacher and patient coordinator) coming to the house to perform Kennedy's initial assessment for the Early Start Program. This will tell us where Kennedy is at as compared to other babies her age and what they will do to try and get Kennedy up to speed. I will post tomorrow with all the details.

I hate doing these long posts because they are always so long, not detailed, and I always forget small spans of time. Anyways, it is late I still have to pump go to bed and wake up at 5:30 a.m. for meds.....so I will post pics tomorrow morning along with my update from our assessment.