tag:blogger.com,1999:blog-19085338883021093412024-02-07T11:58:03.042-08:00Baby Hazel and FamilyThis blog is about the life of Hazel who was diagnosed with Williams Syndrome and the progress she is making in the world.Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-1908533888302109341.post-77680373439483333042010-01-13T11:59:00.000-08:002010-01-13T12:05:01.614-08:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVMvM12Z-e6D3umHMzAySY9VsebQPZhZw4tUk6n3orvvjnqrpBs75ZdER9FMFhCzHTyfVBQdzH1qx2T4h88Z0C641MBaAsm-x9xGN0HLdQcezghms7bBnfn5UBjDFjgSDnUZ_PTnFxpW8/s1600-h/Winter09+065.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 210px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVMvM12Z-e6D3umHMzAySY9VsebQPZhZw4tUk6n3orvvjnqrpBs75ZdER9FMFhCzHTyfVBQdzH1qx2T4h88Z0C641MBaAsm-x9xGN0HLdQcezghms7bBnfn5UBjDFjgSDnUZ_PTnFxpW8/s320/Winter09+065.JPG" alt="" id="BLOGGER_PHOTO_ID_5426317824688928146" border="0" /></a> Hazel and Cedar relaxingHazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com1tag:blogger.com,1999:blog-1908533888302109341.post-75744671215265250642010-01-13T11:49:00.000-08:002010-01-13T12:07:01.452-08:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh98uzcdS1F-fhPb5bQRRddNVUt8ADJHOlfyV-PtBghjBaVZ4qY17mt1t0X1p8QW39uO8TsGmdGwi6l2eb09nHVhFo8FEzqW6sOzzs6zsCIfT0CYuSb5QM8-Iejlk6oNUfmGNdPILzmhCA/s1600-h/Winter09+061.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh98uzcdS1F-fhPb5bQRRddNVUt8ADJHOlfyV-PtBghjBaVZ4qY17mt1t0X1p8QW39uO8TsGmdGwi6l2eb09nHVhFo8FEzqW6sOzzs6zsCIfT0CYuSb5QM8-Iejlk6oNUfmGNdPILzmhCA/s320/Winter09+061.JPG" alt="" id="BLOGGER_PHOTO_ID_5426318264346296338" border="0" /></a> Maddie and Isabelle, best friend cousins.Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-84566311699836505612010-01-13T11:32:00.000-08:002010-01-13T12:23:31.999-08:00Christmas 2009<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8qwA5wwOKGC1IN7LhSqwB2_-eJLU-YRQuM9QY9As1D5AehaW4I7_Sn8vs_LLXW9bSadBM-Ao6sntMmuIhPh39OCrEa3titqWG2hTQKIHYrQu0Zo0QGCn8ocqdiMiJNHnOrprqYUrO5Nk/s1600-h/Winter09+077.JPG"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8qwA5wwOKGC1IN7LhSqwB2_-eJLU-YRQuM9QY9As1D5AehaW4I7_Sn8vs_LLXW9bSadBM-Ao6sntMmuIhPh39OCrEa3titqWG2hTQKIHYrQu0Zo0QGCn8ocqdiMiJNHnOrprqYUrO5Nk/s320/Winter09+077.JPG" alt="" id="BLOGGER_PHOTO_ID_5426319006452291154" border="0" /></a><br />Well looking back Christmas was a blur. We a had wonderful time seeing family at all the different get togethers. The girls had a great time this year especially Maddie. She was so excited for anything related to Christmas or Santa and is beginning to understand the story of the baby Jesus. Christmas eve was a ball with all of the McConville cousins together. The kids did a lot of playing, running and joyous screaming and the adults did a lot of laughing and relaxing, it was a fun time. This year was the first time ever that we did not have a large family dinner on Christmas day. It was nice, we did Santa in the morning with the girls at our house and then Gma Marlys and Gpa Dwain came over along with Cassie, Dominic and Luccio for a brunch and gift opening. Cassie and Dominic announced the exciting news of expecting a baby in early August. It’s going to be hard not seeing her belly grow in person, but hopefully she’ll send frequent emails with pictures and they should be moving back to MN in May. I’m also making another trip out to NYC in March with Sara and Molly so I’ll be able to see her when she’s around 5 months. I’m excited for Cassie and Dominic’s return home and the birth of the first baby. I’ve always imagined living near one another, having babies and watching our children grow and play together.<br />Maddie’s enjoying preschool. She’s becoming a little artist. She drew portraits of Gpa Tom and Gma Autumn and Gpa Dwain and Gma Marlys that I thought we pretty good if I do say so myself. She drew Gpa Tom and Gpa Dwains hair perfectly, barely there, ha! Everyday she does a little better at writing her name and we’re working hard on letter and number recognition. We soon need to decide what preschool program she should attend next fall, 2 days a week (5 hrs/wk) or 3 days a week (6 hrs/wk). We’ll probably have her try T-ball this summer or dance class again.<br />Hazel has earned herself another specialist because of her thyroid levels. We’ll be meeting with a Pediatric Endocrinologist because of suspected hypothyroidism. This could be one of the reasons for Hazel’s poor weight gain and another cause to her low muscle tone. I’m guessing when we see the endocrinologist and if hypothyroidism in confirmed then she’ll be put on Synthroid. Doctor’s appointments and lab draws have become horrendous for Hazel. I think Hazel and Mom and Dad already have post traumatic stress disorder regarding any clinic visits. The minute Hazel is taken into a small room with an unfamiliar person even if Mom and Dad are with she becomes hysterical and fights everything. She thinks she's either going to get a shot or get poked for labs. She really needs something for anxiety if not for doctors appointment at least for lab draws. I have a feeling these next couple of years are going to be really difficult for her and for us regarding doctors visits, let’s pray she remains healthy and doesn’t need many. I’m not looking forward to the rest of the Synagis injections appointments <br />Hazel's sedated echo and renal ultrasound went well. Dr.Baker was happy with how her SVAS repair looked and her pulmonary artery pressures are improving. She still has nephrocalcinosis (calcium build up in her kidneys) which we have to watch for the development of possible kidney stones but the overall health of her kidneys are good.<br /> She’s becoming an honest to goodness walker, walking about 60% and crawling or walking on her knees 40%. She’s saying different sounds and is able to point to her hair, mouth and nose when asked where they are. She was evaluated by district 11 to see what services she will need this year. A speech therapist will be added and her teacher, PT and OT will continue. As we thought she is very behind in language development. Our goal for her is to increase her vocal and verbalization and for her to express her needs and for her to understand us. Right now Hazel has weekly home visits with Lindsay (IEP teacher) and when she turns 3 next October she will begin to receive services outside of our home at one the district class locations and I’ll either need to drive her there or a bus will pick her up in front of our home. She’ll go to class at the minimum 3 days a week for 2 hours a time and up to 5 days a week depending on the services she needs. To be honest I’m rather intimated of her getting on the bus when she’s 3, but if she goes to school 5 days a week I can’t imagine driving her there all the time and trying to get Maddie to school and run errands and get things done around the house.<br />It’s only going to get busier and busier as they get older isn’t it. Anyways I’m going to enjoy my nice day of ECFE in the morning and nothing planned other than hanging with my girls for the rest of the day while I can.Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-36683419230060727212009-12-11T17:44:00.000-08:002009-12-11T17:51:27.560-08:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzmmA4iFeP3N4mTZXg-6Bgfx2e65CbQw7HsLMqudHWU3ZbAVvm8K62paASmqHeEM_IQdlRh0AAss48ZySuyV0GjrCaKOK7UOUbRXiHP0bbC7mXc1kfa53pTnxdonTcon4e8WyBrY50nw0/s1600-h/Winter09+059.JPG"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 154px; height: 212px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzmmA4iFeP3N4mTZXg-6Bgfx2e65CbQw7HsLMqudHWU3ZbAVvm8K62paASmqHeEM_IQdlRh0AAss48ZySuyV0GjrCaKOK7UOUbRXiHP0bbC7mXc1kfa53pTnxdonTcon4e8WyBrY50nw0/s200/Winter09+059.JPG" alt="" id="BLOGGER_PHOTO_ID_5414160668278957826" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisMm5w8x4gavUP5zLuRdZWFp_tIfJIvyd-MU4aDsjSFnticvDL0kLqxJuW5ov5_M0HdNBERuVQlnaDg2PgxPFqjlDDPyfT0RiCd1z8VmIdauQZcb66E7D00qcBoAs_Vp4hM1Gi8cuPPgU/s1600-h/Winter09+047.JPG"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 162px; height: 221px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisMm5w8x4gavUP5zLuRdZWFp_tIfJIvyd-MU4aDsjSFnticvDL0kLqxJuW5ov5_M0HdNBERuVQlnaDg2PgxPFqjlDDPyfT0RiCd1z8VmIdauQZcb66E7D00qcBoAs_Vp4hM1Gi8cuPPgU/s200/Winter09+047.JPG" alt="" id="BLOGGER_PHOTO_ID_5414160363922323890" border="0" /></a><br /><div style="text-align: center;">Our two little helpers having fun decorating the Christmas tree<br /></div>Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-60638110108983699862009-12-10T19:38:00.000-08:002009-12-10T20:02:30.919-08:00Sedated Echo and Kidney UltrasoundHazel is undergoing a sedated echo and kidney ultrasound at Childrens Hospital tomorrow at 1:45. She will be having the procedure in short stay so she will have close access to vital sign monitoring and breathing support if necessary. Basically, she will be next to the OR and PICU in case an "event" occurs. She reacted poorly after her heart surgery and Dr. Baker does not want to take chances. She might have had malignant hyperthermia, but it was not officially diagnosed. This will give us a really good indication of where she is at health wise and we will develop a plan moving forward. We do not expect to get results tomorrow. The nephrologist said that if her results warranted it, we might do a CT angiogram. She officially does not like doctors, or nurses. I don't think she realizes Mommy is a nurse and if she did, I bet she would cry. I guess she is sick of getting squeezed, poked, and measured. It took four people to get her blood drawn at her nephrology appt. Wish us luck tomorrow and lets hope for good results. <br /><br />KellyHazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com1tag:blogger.com,1999:blog-1908533888302109341.post-78888184105351338732009-11-28T14:16:00.000-08:002009-11-28T14:18:49.687-08:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg47N-9FIKKh7JTRDMEgfzDgqthG34HmfiK72ebn7QOyacnJjtoeQroZunTL2GdSI8yL1EVgLOh3AcPMSwFd-CL2O9eSHK8KTw-qga-pvmHfW2c8kqgry1dKAbe6kTI3q7KxGfeEIDinvA/s1600/Fall09+034.JPG"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg47N-9FIKKh7JTRDMEgfzDgqthG34HmfiK72ebn7QOyacnJjtoeQroZunTL2GdSI8yL1EVgLOh3AcPMSwFd-CL2O9eSHK8KTw-qga-pvmHfW2c8kqgry1dKAbe6kTI3q7KxGfeEIDinvA/s320/Fall09+034.JPG" alt="" id="BLOGGER_PHOTO_ID_5409282038233840178" border="0" /></a><br />Maddie the hair stylists raided the barrette bag. She had 30 barrettes in her hair, we had a fun time counting them!Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-40370874268507223972009-11-12T14:39:00.000-08:002009-11-12T14:48:06.447-08:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbbWHuid-03xMjKDqipR0ZiSZ36sIwJJFBiSYZp9_6nQU_itZf2MoO82erdxtxap5sKbWVkTm1zzIPEr0sdPph4_ZxBoz8A_X1aqOTRlLIezyaKcDSgZPv2Ro_i8t68fa5EZi2NoBR32A/s1600-h/Fall09+369.JPG"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbbWHuid-03xMjKDqipR0ZiSZ36sIwJJFBiSYZp9_6nQU_itZf2MoO82erdxtxap5sKbWVkTm1zzIPEr0sdPph4_ZxBoz8A_X1aqOTRlLIezyaKcDSgZPv2Ro_i8t68fa5EZi2NoBR32A/s320/Fall09+369.JPG" alt="" id="BLOGGER_PHOTO_ID_5403352667249386242" border="0" /></a><br /><br />Thought this was just way to funny not to post. Left her alone way to long and she had a surprise waiting for me in the kitchen. She obviously found the cereal cabinet.Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-11106523616087455072009-11-12T10:49:00.000-08:002009-11-12T14:46:42.760-08:00Real blogging here we comeHazel has been doing great !! She turned 2 on October 18 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span> and had her 1 year heart surgery anniversary on October 30 <span class="blsp-spelling-error" id="SPELLING_ERROR_1">th</span>. 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.<span class="blsp-spelling-error" id="SPELLING_ERROR_2">Laco</span>(<span class="blsp-spelling-error" id="SPELLING_ERROR_3">pediatrici</span>an) <span class="blsp-spelling-error" id="SPELLING_ERROR_4">want's</span> her to receive <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Synagis</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_6">get's</span> to have breakfast every other week with Cybil her OT at <span class="blsp-spelling-error" id="SPELLING_ERROR_7">childrens</span>' feeding clinic. Hazel's all business when she goes to the feeding clinic, she eats like a champ. We visited Dr.Baker (<span class="blsp-spelling-error" id="SPELLING_ERROR_8">cardiologi</span>st)<span class="blsp-spelling-error" id="SPELLING_ERROR_9">yesterda</span>y, we were unable to do an echo because of her lack of cooperation (she <span class="blsp-spelling-error" id="SPELLING_ERROR_10">see's</span> a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">stethoscope</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_12">get's</span> upset). So our plan is to speak with Dr.<span class="blsp-spelling-error" id="SPELLING_ERROR_13">Katz</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_14">nephrologi</span>st) at our December appointment to see if we can coordinate an echo and renal ultrasound with <span class="blsp-spelling-error" id="SPELLING_ERROR_15">doppler</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_16">neb</span> treatments throughout the winter months.<br /><div class="uc-message"><br />She gets to play with Lindsay her <span class="blsp-spelling-error" id="SPELLING_ERROR_17">IEP</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_18">OT</span> through the district about every month. A speech therapist will more than likely be added to her <span class="blsp-spelling-error" id="SPELLING_ERROR_19">IEP</span> team to help with with language <span class="blsp-spelling-corrected" id="SPELLING_ERROR_20">development</span><wbr>t. 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 independent<wbr><span class="blsp-spelling-error" id="SPELLING_ERROR_21">ly</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_22">EFCE</span> this morning and everyone cheered.<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_23">sippy</span> cup, pacifier or <span class="blsp-spelling-error" id="SPELLING_ERROR_24">wubby</span> (special blanket). She's a good little helper, helping Mom unload the <span class="blsp-spelling-error" id="SPELLING_ERROR_25">dishwaher</span>, 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 "<span class="blsp-spelling-error" id="SPELLING_ERROR_26">bip</span> 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.<br /><br />Kelly got a new job this year at <span class="blsp-spelling-error" id="SPELLING_ERROR_27">Osseo</span> Senior High. He's an Assistant Administrator which is similar to a Dean of <span class="blsp-spelling-corrected" id="SPELLING_ERROR_28">Students</span>. He finds his new role to be very challenging. Another big <span class="blsp-spelling-corrected" id="SPELLING_ERROR_29">transition</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_30">Osseo</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_31">Hamline</span> and he finally finished his thesis for his masters in education, woo <span class="blsp-spelling-error" id="SPELLING_ERROR_32">hoo</span>!!<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_33">EFCE</span>. We are blessed that my Mom <span class="blsp-spelling-error" id="SPELLING_ERROR_34">watches</span> our girls every Monday and Tuesday while Kelly and are both at work. It saves us daycare money, my Mom is <span class="blsp-spelling-corrected" id="SPELLING_ERROR_35">absolutely</span> wonderful with the girls she has a very special relationship with both of them and I think she really enjoys it.<br /></div>Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-81089245019046653012009-11-11T15:08:00.000-08:002009-11-11T15:17:30.252-08:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjasV89xmYA_HQIgZF3V7n9s_JzBn8H4dr8VJKnTtWSc6ybQi1G_eTY_z6q_eGGf16s84FYtOs3KV5mQb_D52zInqvzJ-jGlcPrzBsfETrn3l4np-KsmLKORW3fUVuLWvdGTYLS9wVWGXI/s1600-h/Fall09+028.JPG"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 320px; height: 250px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjasV89xmYA_HQIgZF3V7n9s_JzBn8H4dr8VJKnTtWSc6ybQi1G_eTY_z6q_eGGf16s84FYtOs3KV5mQb_D52zInqvzJ-jGlcPrzBsfETrn3l4np-KsmLKORW3fUVuLWvdGTYLS9wVWGXI/s320/Fall09+028.JPG" alt="" id="BLOGGER_PHOTO_ID_5402988652095783922" border="0" /></a><br />Maddie and Hazel playing in the leaves, while Mom and Dad rake up the leaves in the back yard.Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-84815611830777235002009-11-10T17:34:00.000-08:002009-11-10T17:40:12.746-08:00Cardiologist 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.<br /><br />KellyHazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-32746617292082688482009-06-16T19:45:00.001-07:002009-06-16T19:58:03.661-07:00NephrologistToday 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...Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-82087588485995644412009-05-23T18:14:00.000-07:002009-05-23T18:26:33.571-07:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX4WxDYPzlhjYtjYuDVYvcIKXKcar8ys-pDgNTeqmMdGt3Fgh2iLJG5pZHOfN-1mP3s2FwOO3-ikk_BaVW3pnlLdKCAEcsxRTw2QEdGzn94HjPBkju45P3ReXGPLHGn60_T89qYeMX9Jo/s1600-h/014.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX4WxDYPzlhjYtjYuDVYvcIKXKcar8ys-pDgNTeqmMdGt3Fgh2iLJG5pZHOfN-1mP3s2FwOO3-ikk_BaVW3pnlLdKCAEcsxRTw2QEdGzn94HjPBkju45P3ReXGPLHGn60_T89qYeMX9Jo/s320/014.JPG" alt="" id="BLOGGER_PHOTO_ID_5339193223417277058" border="0" /></a>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.Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-49444303758978009462009-05-23T07:05:00.000-07:002009-05-23T07:10:48.661-07:00Time....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.Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0tag:blogger.com,1999:blog-1908533888302109341.post-17874835216485402952008-10-04T11:24:00.000-07:002008-10-04T11:47:41.675-07:00Baby Hazel's updateI 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.Hazelhttp://www.blogger.com/profile/11129434081350553381noreply@blogger.com0