Real blogging here we come

Hazel has been doing great !! She turned 2 on October 18 th and had her 1 year heart surgery anniversary on October 30 th. She has had no major health problems, just the normal childhood bugs every now and then. She's received both the flu and H1N1 vaccine and Dr.Laco(pediatrician) want's her to receive Synagis again this year if our insurance approves it. Her weight has been a struggle, she lost some weight, gained it back, but isn't putting on the pounds. We believe that is from her becoming more active, eating more food on her own and the fact that we have decreased her tube feeds. She still is tube fed 3-4 times a day depending on how she eats. Her doctors are watching her weight closely, but they do not feel it is related to her heart working to hard. Hazel get's to have breakfast every other week with Cybil her OT at childrens' feeding clinic. Hazel's all business when she goes to the feeding clinic, she eats like a champ. We visited Dr.Baker (cardiologist)yesterday, we were unable to do an echo because of her lack of cooperation (she see's a stethoscope and get's upset). So our plan is to speak with Dr.Katz (nephrologist) at our December appointment to see if we can coordinate an echo and renal ultrasound with doppler under sedation in 6 months or so. Then we will have a detailed report of how her heart is doing after surgery and how the blood flow is to her kidneys and if they are growing adequately. She continues to be on 4 different medication, one for reflux, one for blood pressure control, one for her kidneys and another to help her sleep. She'll also be getting neb treatments throughout the winter months.

She gets to play with Lindsay her IEP teacher through the school district every week. She appears to be more attentive to toys while she's playing, playing with them for longer periods, although she is still easily distracted. She is much more vocal, but when her teachers and therapists are here she clams up. She gets to see Lynn her PT and Mary her OT through the district about every month. A speech therapist will more than likely be added to her IEP team to help with with language developmentt. She loves looking at books, playing catch with Sam, listening to music, playing with Maddie, playing in the bathtub and she loves, loves to be outside. A little before her birthday she began standing up independently and would take small steps towards you if she was very encouraged. She is still very cautious and prefers to crawl but she will take unprovoked steps, in fact I saw her take about 6 steps all by herself at EFCE this morning and everyone cheered.

Maddie's 3 1/2 and asserting her independence. She started preschool every Tuesday and Thursday for 2 hours which she enjoys. She likes doing art projects, playing on the the playground and singing songs at preschool. They are practicing numbers and letters, writing their names and cutting on lines. Her teacher's told us she has some difficulty sharing at times but that's a 3 1/2 year old for you. Now that Hazel is a little older Maddie really enjoys playing with her and she's really caring when Hazel is sad, running to get her a sippy cup, pacifier or wubby (special blanket). She's a good little helper, helping Mom unload the dishwaher, getting diapers for Hazel, bringing in laundry to be washed and sometimes I will find that she has cleaned up her whole room of course this is while she is supposed to be napping. She's pretty well potty trained just a couple accidents here and there. Maddie loves to go on Target runs with me, when ever we run out of something she always says, "we'll have to go to Target to buy some more", I've created a Target addict already. We are in the process of taking her pacifier away, but it's been a challenge. She only uses it at night, but she has become dependent on it to help her fall asleep. Were trying the "bip fairy" now and we've already cut the end off of her pacifiers, and we're trying to get her to understand that it is hurting her teeth. We just have to stick to our guns and do it. She's in her own room in the basement now so that might be part of the difficultly with this transition too. If any body has any suggestions on taking pacifiers away let us know. Hazel's addicted to her pacifiers too, but we're not worried about her yet, it will probably be even harder with her.

Kelly got a new job this year at Osseo Senior High. He's an Assistant Administrator which is similar to a Dean of Students. He finds his new role to be very challenging. Another big transition with this new role is that he is no longer the head wrestling coach at the high school, he cannot do it because of AA responsibilities and time constraints. I know that is a surprise to a lot of people including me because I thought teaching and especially coaching was his dream job. He'll still be very present in the Osseo wrestling program, helping out whenever he can. He stays very busy doing extra coaching with other wrestling programs, helping out family and friends, taking classes to get his administration certificate at Hamline and he finally finished his thesis for his masters in education, woo hoo!!

I (Kristy) am still working at Mercy Hospital 24 hours a week, every other weekend and every Monday and Tuesday. I enjoy my job and love my coworkers. I am pretty sure that I don't want to be a floor/hospital nurse for my whole career, but right now it fits with our lives so nicely, so I'll be there for a while. Even though I only work 24 hours a week I stay very busy at home and with the kids. We have something going every day whether it be Hazel's teachers/therapists coming over, going to doctors appointments, going to preschool or going to EFCE. We are blessed that my Mom watches our girls every Monday and Tuesday while Kelly and are both at work. It saves us daycare money, my Mom is absolutely wonderful with the girls she has a very special relationship with both of them and I think she really enjoys it.

Maddie and Hazel playing in the leaves, while Mom and Dad rake up the leaves in the back yard.

Cardiologist appt.

Today Hazel had her 6 month appointment at Children's Heart Clinic. Dr. Baker was unable to get too much information as Hazel would cry when the stethoscope came near. The plan of action is to have Hazel undergo a sedated ECHO as well as have a doppler on her Kidneys to look at blood flow in March or April. This will give us a sense of where she is at and if or when to have more heart caths. As far as development Hazel is still hovering around 19 pound 10 ozs. It is interesting that she has not really gained weight in the last 6-8 months. No one is concerned about this, but it is something to keep an eye on. She is walking a little bit (4 steps) every once in a while, but does not seem overly interested in it as a mode of transportation. We will update pictures soon.

Kelly

Nephrologist

Today Hazel went to the nephrologist (kidney specialist) for a follow up appointment. Her doctor is great but he comes at you with questions that makes your brain perk up and try to respond. I sat and pictured my brain grow two little arms and slap itself awake and sit up straight. Hazel did really well today. She broke 20 lbs, she went pee in the sample bag and they magically got her blood pressure on her arm. We have to go back and get a renal ultrasound to see if her nephrocalcinosis has gotten worse, stayed the same, or gotten better. The last thing we did was get blood drawn and she did really well. Now we wait for the results...

Our family went to the upper midwest annual Williams Syndrome Picnic. We went last year when Hazel was 7 months old. We had a great time visiting with the kids and talking with the other parents. It's wonderful to see all the kids a year older and that everyone is doing well. We hope to make it a yearly outing.

Time....

The hope was to move Hazel's caringbridge site over to this blog, but we were a little side tracked with health issues. A quick update on Hazel since last Oct. 4th's post. She had successful Open heart surgery to fix her SVAS. She was switched over to Calcilo formula and has since started to go off of it. She has been put on Propranolol and Diuril to control her blood pressure due to her hypoplastic renal arteries (Kidney arteries). Hazel is now eating real food and cruising around. All in all we are really happy with how she has progressed since surgery. We hope to never have to go through a surgery like that again.

Baby Hazel's update

I am new to blogging, but here goes... We are going to move all of the information on Hazel to a blog from caringbridge. Hazel just had a heart cath and we found that her condition has not improved and a slow filling coronary artery means surgery in about a month. She has such small pulmonary arteries and we are really worried about how long her right ventrical can keep up the pressure it is under. Hazel will not take her formula anymore, so we are considering switching to some other brand. We will see the geneticist on Monday for a consult and update her on Hazel's progress. We anxiously waiting to here the result of the surgeons consult next Thursday and here their plan of action for Hazel.