tag:blogger.com,1999:blog-19443739857833056122024-03-20T21:07:51.170-04:00Mikaela's PathFaithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.comBlogger86125tag:blogger.com,1999:blog-1944373985783305612.post-31467781902153224212010-07-30T16:20:00.002-04:002010-07-30T16:20:52.297-04:00Arrival TimeJust called in for our arrival time on Monday.......6:30 a.m. Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com0tag:blogger.com,1999:blog-1944373985783305612.post-27680097376995785652010-07-30T11:22:00.000-04:002010-07-30T11:22:48.828-04:00Quick updateJust running out the door to pick up Juliana from Vacation Bible School, but wanted to let you know: Mikaela goes in for the second CI on Monday, August 2, 2010. All prayers and positive intentions are welcome! <br />
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I will let you know how it all goes next week. Have a wonderful weekend everyone!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com1tag:blogger.com,1999:blog-1944373985783305612.post-91109253501200761332010-01-10T14:23:00.000-05:002010-01-10T14:23:39.231-05:00She's BackJust to update everyone...<br />
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Mikaela is home. Her stay in the ER wasn't too long. Tough on her and Daddy though! They took a few x-rays of her belly and determined that there wasn't any bells present (Thank you, God!). Along with the scans, the docs thought her temperment also supported the diagnosis of NO BLOCKAGE! Whoo Hoo!<br />
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From 5:45 - 7:10 am, she drank and kept down 9 ounces of Pedialyte, then she fell asleep. Kurt woke her up at 10 a.m. to get her dressed to come home. She ate a few graham crackers and some more apple juice and headed home. She looked exhaused when she came through the door, but wanted to play with her sister. Of course Otto continues to get the most hugs in the entire family from her! <br />
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She went up for a nap at 1 p.m. and I don't really expect to hear from her for several hours! <br />
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On another note, Thursday, her PT came out for our monthly visit and Mikaela is discharged from Physical Therapy! Her therapist is confident that she is quickly closing the gap to 'age appropriate' activities for a 26 month old! I am so happy for her! Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com0tag:blogger.com,1999:blog-1944373985783305612.post-54745987129076700632010-01-10T02:53:00.000-05:002010-01-10T02:53:21.057-05:00Not HappySo all was well today (1/9), it is my mom's birthday, we picked out the granite slab for our kitchen, had a good lunch, and put Mikaela up for her nap. Juliana had a friend over for a playdate, the Christmas lights came down and we were working on the tree. But Mikaela wasn't falling asleep for her nap. Not all that unusual. So I went up, gave her the bink. A half hour later or so, did it again and changed her diaper. I was planning to bring her down, but she was rubbing her eyes and seemed sleepy. So although it was 4:30, I decided to put her back in bed to see if she would sleep a bit.<br />
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Ten minutes later, she was calling, "MOM!!!" "MOM!!!" (Again, not unusual.) Kurt said he would bring her down as I was feeding Rebecca. He gets upstais and calls down that she had thrown up in her crib. <br />
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Well, to make a long story short....she hasn't stopped and since it is now 2:47 a.m. we are now worried about dehydration. We talked to the doctor, called our nurse line, and low and behold, Kurt left to take her to CHoP. There is also a potential bell swallowing situation that may be at play here, but we aren't sure.<br />
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This is the first time, I am not there with her for this stuff. I am filled with dread as I know what is happening. I am NOT HAPPY. But I am going to try to go up to bed and sleep. I'll need to get sleep to stay healthy for the other two. I'll keep you posted as I hear from him. Please say prayers if for some reason you are up and not sleeping at this hour! :-)Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com0tag:blogger.com,1999:blog-1944373985783305612.post-2502387232721379642009-12-30T23:01:00.000-05:002009-12-30T23:01:16.420-05:00Welcome BackIt sure has been a while!!! So much has happened since I posted last. Six months ago. I'm quite embarassed, but more astonished! <br />
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I'll bring you up to speed - Reader's Digest style. We'll get the GI stuff out first. We had two trips to CHOP for suspected intestinal blockages, but to our surprise, there weren't any. Thank God! She had all the tell tale signs, but the scans were clear and we were kept overnight for observation and send home the next day - both times. She still has a bit of acid reflux, but hasn't thrown up since the day after Thanksgiving.<br />
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Mikaela started walking October 22nd, four days prior to her second birthday. Physically, she is slowly catching up to a typical two year old. Although, to tell you the truth, I am not certain what she should be doing by now. She is walking faster, gaining better balance, she can jump a little while holding on to something. We only have physical therapy once a month now.<br />
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She has added weekly speech therapy to our Teacher of the Deaf coming six times per month. Her language is just booming! Her word approximations are in the hundreds now. She speaks in two - three word sentences and talks pretty much every waking minute! :-) Who knew my deaf daughter would be keeping up with her big sister?<br />
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Speaking of big sisters, I never told you all what I had....ANOTHER GIRL! Rebecca Nicole was born 9/9/09 and weighed 8 lbs 14 ounces. She is an angel of a baby. I am truly blessed. Here is a current picture of her:<br />
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As you can imagine, my New Year's resolution is to post here more! I want to share more of Mikaela's journey, but these last several months, I have been living in the moment and just enjoying my family. <br />
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Thank you for continuing to follow Mikaela's story. Until next time....Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com1tag:blogger.com,1999:blog-1944373985783305612.post-35580597196307780962009-07-22T19:32:00.002-04:002009-07-22T19:53:22.267-04:00How we doin'?Mikaela is progressing very nicely! We had our 6 month follow up appointment at CHoP yesterday. She is 'right on target' for the amount of time she's been activated. She is responding to sounds in the 35 dB loss range. She is most likely hearing softer sounds, but not consistently responding to them based on her age and interest.<br /><br />Her receptive language is just wonderful. She shows lots of indication that she is learning by incidental language much like kiddos without any hearing loss. I will say a word in regular conversation with Juliana or Kurt and she signs it. She really enjoys listening to lots of different sounds. She plays with some of Juliana's old Dora books that have a speaker and has Dora saying different things in English and Spanish. The one book, in particular, has sounds like a balloon blowing up, different instruments, a ball bouncing, and she can't get enough of it. <br /><br />Expressively, she is coming along. She repeats lots of intonation, duration and approximations of words. My goal this weekend, since we are on vacation at a family reunion, is to make a list of her expressive language. I would have to say we are over 20 or 30 'words'. Of course you may not know what she said, but I do! :-) We would like to see more consonants emerging over the next few months. Her audiologist made some adjustments to the program which should increase her access to some of the softer sounds of speech. I also have a speech evaluation request in with my Early Intervention team to see if speech therapy is something we should bring on board. (with the other 18 hours per month that she is already receiving.) Oh, well, I am a firm believer in 'no time like the present'. Honestly, why wait, though? If she needs it, she needs it!<br /><br />Physically, she is getting closer everyday to walking. (Please, God, help her to walk by the end of this weekend!!!) Okay, maybe I'm pushing it! But I am 7 weeks from delivery and I can't carry her very far any more!! This baby is pressing on so many ligaments and ribs that I could scream. Add in the 20 plus pounds that Mikaela weighs and I am close to tears! <br /><br />Today, Juliana went down the basement and brought up a doll stroller. Immediately, Mikaela had to take it from her! I was fearful that it was too light, considering I still have a 5 pound weight in the push toy she has been using. She whipped that thing around like no body's business!! She fell once, but didn't seem too shaken or daunted! That will be coming with us this weekend!! <br /><br />PT wouldn't leave on Monday until Mikaela stood - by herself! I told her the bed upstairs was clean and I could make room in the drawers....BUT Mikaela did stand for a few seconds! We had to distract her with bubbles, but she stood! Once she realized she wasn't supported, she lowered herself to a sit. This has been the trend since Monday.<br /><br />Today at Juliana's ballet class, I wouldn't let Mikaela crawl at all. Where ever she wanted to go, I said, "stand, please" and walked with her holding one hand. That will be the theme this weekend. No one carries her or lets her crawl! We will grab a hand and walk her to her destination! I am determined to show her that she CAN. We have to believe in her until she believes in herself!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com2tag:blogger.com,1999:blog-1944373985783305612.post-89451061158839159752009-06-22T18:45:00.005-04:002009-06-22T18:57:29.244-04:00CI's and Music<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgth7eY5N6HKsyEShoAJZL1IErfYfC-FQHOEpo1edwy-vkTQWl9bezDV0MiopD61D9VasZHD3hyLtsDMQVgOxp6eTwNzYrF0t1W-isUVqqezfCuLj1XeKjknUWOzXzZfWOyFqseF-kYYyB3/s1600-h/IMG_3687a.JPG"><img id="BLOGGER_PHOTO_ID_5350289287372184050" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 242px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgth7eY5N6HKsyEShoAJZL1IErfYfC-FQHOEpo1edwy-vkTQWl9bezDV0MiopD61D9VasZHD3hyLtsDMQVgOxp6eTwNzYrF0t1W-isUVqqezfCuLj1XeKjknUWOzXzZfWOyFqseF-kYYyB3/s320/IMG_3687a.JPG" border="0" /></a><br /><div><a href="http://tinyurl.com/mdykek">http://tinyurl.com/mdykek</a><br /><br />Above is an article posted on a few of the CI loops to which I belong. I found it really interesting and worth noting here. (I will also copy and paste it for reference once Mikaela starts school.) The article notes how CI users benefit in quiet environments, but how noisy environments are a huge challenge, particularly background music. Good to note for parties and just whenever we are in noisy situations.<br /><br />Ever since I learned of Mikaela's hearing loss, I have listened to music less and less in the car. I know that it is a challenge to hear us talking over the road noise let alone adding in music!! If there is silence in the car, she is more likely to keep the processor on for the entire trip. Add too many potholes or background music and she is much more likely to pull it off. Subsequently, she prefers windows closed as well. The wind is too much and she will take it off.<br /><br />Just sharing this here for those of you still learning about CI limitations and special considerations for CI recipients. Please take the time to read the entire article and I would love to read any comments or thoughts you have. Thanks!</div>Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com0tag:blogger.com,1999:blog-1944373985783305612.post-31934064695107604512009-06-03T19:30:00.003-04:002009-06-03T19:37:53.277-04:00Cochlear shares rise on new implant<a href="http://business.smh.com.au/business/cochlear-rises-on-new-implant-20090603-bv0r.html">http://business.smh.com.au/business/cochlear-rises-on-new-implant-20090603-bv0r.html</a><br /><br /><br />Here is an article about Cochlear Corp. and a new implant and processor coming out in a few weeks!<br /><br /><br />The implant itself will be smaller and the processor (outside of the head) is to have lots of new features and a sleeker design. Looking forward to learning all about it!<br /><br /><br />I do want to have Mikaela implanted in her left ear in a few years. Before she starts Kindergarten, maybe. It's just never an easy decision to have your child go under the knife for ANY reason, unless it's life saving. As nerve wracking as that is as well, it is much easier to justify! :0)<br /><br /><br /><p>Never know when the link will be taken down so here is the article below: </p><p>Cochlear rises on new implant<br />Eli GreenblatJune 3, 2009 - 11:57AM<br />Shares in bionic-ear implant company Cochlear rose nearly 2 per cent this morning on growing speculation the company will soon win US Food and Drug Administration approval for its new implant and processor.</p><p>The win from the US regulator would allow a launch at a forthcoming key US conference in mid-June in Seattle. Analysts expect a launch in the European Union towards the end of this year.<br />UBS analyst Andrew Goodsall said expectation of the US clinics is that the "sleek design and features'' of Cochlear's new product will appeal to the market and is likely to result in market share gains.</p><p>Cochlear shares were up 94 cents, or 1.7 per cent, at $55.54 in late morning trade.<br />Mr Goodsall said he believed that Cochlear would seek FDA approval via the "510K like" path, which required the company to substantiate equivalence with an existing approved product.<br />"In this case the new implant is expected to essentially be a thinner/smaller version of the N24 implant. "We understand that Cochlear has submitted appropriate data and a decision is pending,'' he said. "Previous channel checks found the industry universally impressed with Cochlear's new feature-packed product suite. "New implant, being materially thinner, it is likely to be implanted without/less skull `excavation', which will appeal to surgeons. New processor, regarded as revolutionary in small design, high-tech features and software flexibility - all of which should strongly appeal to patients and clinicians.''</p><p>The processor that sits inside the bionic ear implant is also expected to be much sought after by customers as it has a range of new features such as requiring fewer batteries, a metal housing and fittings that will improve durability and a remote control that can operate two processors (bilaterals) and also serves as a link to external devices such as an iPods.</p><p>Cochlear recently reported a 22 per cent rise in profit to $69.94 million for the first half, and issued earnings guidance for 2009 profit to rise between 15 and 20 per cent. Unit sales contribute about 66 per cent of Cochlear's total earnings.<br /></p>Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com2tag:blogger.com,1999:blog-1944373985783305612.post-52021790598339492392009-06-02T22:19:00.003-04:002009-06-02T22:41:55.098-04:00The 'test' resultsSo the 'test' we used is the Integrated Scales of Development Checklist for Listening, Receptive and Expressive Language. It is put out by Cochlear Co. I think there is another area for us still to evaluate, but this is what we have so far...<br /><br />Her current results are:<br /><br /><strong>Listening</strong> she is a solid 13-15 months with emerging skills at the 16-18 month range.<br /><br /><strong>Receptive</strong> is the same<br /><br /><strong>Expressive </strong>is about 10-12 months with emerging skills at the 13-15 month range. (Thank God for ASL because sign counts!) Her oral expressive is right on track, in my humble opinion, for someone who has only had access to speech for about 5 months. Only those who live with her can really understand her expressive approximations. For example: Outside is 'ow, eye', Da Da is "aa, aa", More is 'muh', Bye-bye is still "eye, eye". The two words that are pretty darn clear are "Hi" and "mouth" (she says "mouf" - but the 'f' doesn't always show up. :-))<br /><br />Like I said before, I couldn't be happier with how well she is doing in only 5 months! I think she understands a lot, and it is so cool to see that she is benefiting from the CI. I am happy that we did choose to give her this opportunity. It helps that she really wants to learn to listen and speak. She watches our mouth like a hawk!! One if my favorites is when we sing and sign the ABC song, she appears to move her lips with ours and her fingers are trying to do the signs! I have to get that on video!!!<br /><br />Well, I am dog tired and I have another full day tomorrow. So I am signing off for now! Good night, all!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com1tag:blogger.com,1999:blog-1944373985783305612.post-41890600312973342812009-06-02T13:29:00.004-04:002009-06-02T14:03:57.306-04:00So much!I have to say, Mikaela is doing very well these days. Thank God.<br /><br />We did have a scare on the 17th of May, though. She woke up not happy. I assumed teething, but she was miserable. I put her in bed early for a rest - didn't think she'd nap because it was before lunch, but thought she could just use some quiet time. Around 11 a.m. she was making noises that I knew I should go up. She was pastey white, sweaty and clammy. She had absolutely no color in her lips or face. I picked her up and thought maybe she caught a virus. About a minute and a half later, she puked all over us. Lovely! I ran in the bathroom and managed to get the next wave or two in the appropriate location!<br /><br />Kurt came up and cleaned up. I got us both changed and went downstairs to the couch armed with the basin and some cloths and tissues. She continued to throw up and by 1 p.m. it had the all-to-familiar green tinge to it. I called my step-mom and asked if she could cover Juliana as we were heading back over to CHoP for another bowel obstruction. I was a complete mess! Because I knew what was in store for her....surgery.....AGAIN....(I was also very bummed to miss the picnic for our South Jersey Family Fun Group!) You have to see how badly this affects her. She is completely colorless, listless, weak. So weak in fact that I have to hold her head up as she vomits. It's scary!<br /><br />She continued to vomit until we got to CHoP around 4:45 p.m. Still green. Then all of a sudden, she turned a corner. She began to sit on her own. Point to things and play with my necklace. Hmm....this was different. Well, she went through the gambit. IV, NG tube, blood work, CT scan, contrast X-ray. We got admitted to the surgical floor, yet they saw no blockage on the scans. Interestingly enough, she was much more alert than in the times past. This was both good and bad. Good because maybe there wasn't a blockage....Bad because she CARED that they were poking, prodding, sticking her every so often! The NG tube wasn't bringing up anything of consequence. The scans were clean....She didn't need surgery after all! The doctors can't say what would cause the green vomit - other than a blockage. So, I believe that we got a miracle. There must have been a blockage, but it must have untwisted itself. I believe that all the prayers were heard and answered. Again, thank God!<br /><br />So physically, Mikaela is beginning to get much more confident! She is cruising like a pro. Gets up and lowers herself with much more ease and stability. She can crawl super fast now. She walks pretty well with a push toy, but not looking like walking on her own for a while longer. I really wish she could walk because she is getting so heavy for me to carry. We are both gaining weight at a nice pace and my back is paying the price! Her core strength is getting better and all the PT is showing it's effect.<br /><br />Listening wise, she is doing amazingly! Her TOD and I did a 'test' with documentation that would let us know where she is compared to a 'typical' hearing child and she surprised me! She is comprehending solidly at a 12-14 month level (I think). Oral expressive language is maybe 9 months or so. Once I get a copy of the results, I'll post a correction.<br /><br />She does really well with signing though! She is beginning to string two signs together!! Like 'more, o'. For 'more cheerios'. Or more and please! It's so awesome and something I just took for granted with Justin and Juliana. <br /><br />Each week I see so many new accomplishments that I am thrilled with her progress. She seems so much happier and her pediatrician thinks she 'engages' more than a typical 18 month old. She wants to play <em>with</em> you, not just alongside you. My thought is: all that therapy is why!<br /><br />I can't believe it's June already and in only 3 months, we'll be adding another blessing to our family! I couldn't really be happier!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com2tag:blogger.com,1999:blog-1944373985783305612.post-44512694995963787742009-04-18T11:15:00.006-04:002009-05-03T14:26:35.111-04:00April's progress continuedLike I was saying.... :-)<br /><br />I am very pleased with her progress! She's been able to hear speech for less than 4 months. Remember she doesn't have access to speech all the time either! She sometimes takes off the processor in the car. Sometimes she takes it off during play (but that is very short lived - I'm right there popping it back on!). However, with the amount of time she is able to actively listen, she is doing awesome.<br /><br /><br />Her receptive language is growing in leaps and bounds. She points at everything and wants to know what it all is. Expressive will take some time. I am just thrilled that she is moving through the 'typical' phases of listening and ultimately speaking.<br /><br />Her first word that is really close is mouth. She says "mouf" and it is so darn cute!! Everything else she says is an approximation....Like Meow is still "Mou". But she is really doing well imitating as best she can!<br /><br />Physically she is getter stronger and more confident each week. We just got her the traditional white shoe that comes up the ankle a bit for additional stabilization to aid in her walking. They aren't the hard sole that Justin wore (as did most of us), but a really nice cushy sole....like a sneaker. I love them! She is beginning to bounce by bending her knees more. We also got one of those toddler trampolines for inside and Juliana loves it! Mikaela is getting used to it, but likes to sit and play with her toys on it rather than exercise! Her PT gave us ankle weights for her to wear 5 minutes each day. They are 1/2 pound each and will strenthen her legs (obviously!) I was really forgetful last week and will do much better this week!<br /><br />My plan is to post shorter and more often! Talk with you soon!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com1tag:blogger.com,1999:blog-1944373985783305612.post-23470795416905694262009-04-16T14:12:00.002-04:002009-04-16T15:49:32.416-04:00The consonants are coming!!! The consonants are coming!!!Mikaela continues to thrill us each day! She really has quite the sense of humor and loves to make us laugh! <br /><br />So much progress is happening all around. Let's start with hearing/speech. She is really aware of sounds now. She has begun to apply meaning to the sounds she is hearing and has quite of list of words she recognizes orally only. That amazes me! (I will be adding a list on the blog page soon.)<br /><br />What is thrilling me the most is when she babbles! After being activated around 3 months, she began to make sounds she has never made before! She is beginning to make sounds like typical hearing babies make! It is such a thrill since for so long, the only sounds she made was "AH", and "NG". To hear her babble is nothing I take for granted..... She added vowels like "eeee", O (long and short) U (short only). She added consonants as well!! She has P, B, F, and M. She has been saying: up, woof (sounds like uff), ow, (as in meow), ab, (we aren't sure what that is to her, but she uses it a lot!) mamamama, and her favorite ...Uh-Oh. This has been status quo for several weeks now. She kinda stalled here. Since her last mapping, she has actually has dropped some consonants. She has gone back to "uh, uh, uh" for up, up, up. She dropped the F for a while at the end of woof, woof, but it has come back this week. It makes me wonder if there is something up with this last mapping. Or is she developing other areas and pressing pause on the original gains? I know typical kids do this sometimes.<br /><br />Darn, I hear Mikaela waking up from naptime...so, I suppose I'll write more soon! It won't be so long....I promise!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com1tag:blogger.com,1999:blog-1944373985783305612.post-42955650716496057892009-03-02T16:51:00.011-05:002009-03-02T17:24:57.664-05:00Right DecisionFor those of you who know how much I agonized over the choice of giving Mikaela a CI or raising her culturally Deaf, it was not a pleasant time. I never want Mikaela to feel as if I don't honor her deafness. I do. Ultimately what lead to the decision to implant, for us, was we want her to have all options open to her. Hopefully, the majority of the Deaf community will welcome her anyway. It is my understanding, for example, at this time at <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Galludet</span>, that close to 50% of students do have a CI. So maybe they are accepted or maybe there is a community within a community.<br /><br />Anyway, at this time, I feel we made the right choice for Mikaela and our family. Every morning and after <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">nap time</span>, when I put her processor on, she lights up. HUGE smile and a little wiggle/dance thing! She really seems to enjoy listening and wants to be engaged in everything around her. She is much more vocal when wearing than not. Like I said in the previous post her receptive and expressive is really amazing for only be activated two months. I wasn't expecting much for the first 4 months or so, but I am thrilled to see her comprehend more each week.<br /><br />She loves to laugh when she hears us laugh. She imitates so many things we say it cracks me up. Of course, she only imitates duration at this time, but if you are paying attention, she does it for a lot of what I say!!<br /><br />Her newest sound is 'o'. She often says Uh, Oh when she throws her water off her high chair - or anything for that matter. She also says <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Oww</span>, like in meow when we see the cat. So those are completely new for her. With her hearing aids, she only had Ah and <span class="blsp-spelling-error" id="SPELLING_ERROR_3">MMM</span>, or more like <span class="blsp-spelling-error" id="SPELLING_ERROR_4">NNNG</span> for sounds.<br /><br />She turns to her name pretty <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">consistently</span> now. She loves to listen to her sister sing and do silly faces with funny noises. It amazes me to see her play with toys that make noise. She loves the refrigerator phonics that we had for Juliana. She plays the ABC song and starts to dance! She has a baby that plays lullabies and she likes it now. Before it as just a plain baby that she would throw to the side. She is beginning to turn to Daddy when he talks, Juliana when she talks and me when I talk. So she may be beginning to have some discrimination.<br /><br />Most importantly, <em>SHE loves to hear</em>. She loves to be a part of <em>every</em> conversation and her<em> total</em> environment. I am finally convinced that we made the right decision for Mikaela. It is quite a joyous relief!!!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com1tag:blogger.com,1999:blog-1944373985783305612.post-28488924014515937342009-02-20T12:08:00.002-05:002009-02-20T14:24:49.839-05:00Great month!Wow! I can't believe a month has passed since I last posted here! Where does the time go? <br /><br />Mikaela has had a really great month! Since her latest GI surgery, she has been eating like a champ! Real food! She loves chicken, turkey, most veggies, pasta, tortillas, some fruit, amazing! I swear, the first time I gave her chicken and peas (her first attempt at grown up food) I almost cried! To see her feed herself and drink from the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">sippy</span> cup was something I took for granted with Justin and Juliana. It almost brought me to tears for the first week!<br /><br />Since she's been eating better, she seems to be getting stronger physically. She scoots around in a sit position all over the place. I can't begin to describe how she does it. I suppose I should video it and attempt that whole YouTube thing. (Maybe <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Lucas's</span> mommy will help me with that!;-)) Last week she pulled herself to stand in the crib for the first time unassisted! I had her in a sit and went to the bathroom to dump a dirty diaper in the hopper and when I came back she was standing. Now whenever I put her in the crib to hold her while I do something, she's standing when I get back! She still is not getting into a sit from lying down. Her "walking" still has a long way to come, however she is making progress!<br /><br />Now for her hearing news! Amazing stuff! This past week - week and a half - Mikaela is really tuning into her environment. She looks towards sounds much more consistently. She is still <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">mimicking</span> duration of speech. There are four words/phrases that she recognizes strickly by auditory input. No signing accompanying it! When I say, "more? more? do you want more?" She often (not always) signs 'more' to me. Same thing with light. I say, "light, light, where's the light?" and pause....(pausing is the key!!! So hard to shut up and give her a chance to process and respond, but I am getting really good at it!) She will look up, and point to the light...then she signs it to me. She does "so big" and the last thing is "Uh, Oh!" when she drops something. It is adorable the way she flips up her palms by her shoulders and says, "uh, oh!" She is getting better at "bye, bye". Right now it sounds like "ah, ah" but the other day it almost sounded like, "ah, aye" ....a slight long i sound! It is really amazing to know that the brain is making sense of the electrical impulses! <br /><br />I treasure every step. I am not at all anxious. I don't worry about what she will or will not be able to say. I trust that she is moving at the pace that is perfect for <em>her</em>. Hence the title of this blog, yet again, <em>Mikaela's path.</em>Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com5tag:blogger.com,1999:blog-1944373985783305612.post-24588262215562412242009-01-20T15:23:00.003-05:002009-01-20T15:37:15.937-05:00"So she can hear now, right?"Well, technically "yes". But not like you might think. <br /><br />Several are wondering what is happening with Mikaela's hearing now that she had the CI surgery and is 'activated'. I hope to shed a bit of light for you. <br /><br />First of all, she can only hear out of one ear. Her left ear has nothing providing any sound at all. It is called a unilateral hearing loss. Second, she is at the very beginning stages of hearing/listening. It is called 'detection'. She is beginning to detect that there are sounds around her. But at this point, she doesn't know if the sound is coming from me, the doorbell, the microwave, the dog or anything else for that matter. Our early goals are just to introduce her to lots of sounds and point them out for her. For example, one game we play is I put the house phone on the table next to the side with her implant as she sits in her high chair. I call the house phone from my cellphone. I point to my ear and say, "OH, I hear that!.....Do you hear that?....It is the phone!" Then I pretend to answer say, "Hello, I love you...Bye!" and hang up. Through time and repetition, she will begin to recognize that sound and know the source. Same thing with the microwave, doorbell, dog barking, water in the sink, rolling her highchair, <em>everything!</em><br /><br />Remember, hearing babies hear in the womb. Then spend the first 4 months just listening to their environment and then begin to babble and play with their own mouths to understand sounds and beginnings of speech. Mikaela didn't hear in the womb. She only gets the opportunity to listen to her environment when she is awake and wearing her processor. (There is a slight battle about keeping it on her.) It will take time...months....before she recongizes and consistently responds to sounds. She has only been activated for 29 days and the first week of that she didn't even have it turned up loud enough to hear speech. Then she lost a good 4 days in the hospital with her bowel surgery.<br /><br />It is working. She is hearing. We just can't 'see' it yet. As always, feel free to email or call me with any questions. I am happy to share! I am thankful for your interest! Blessings to you all!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com2tag:blogger.com,1999:blog-1944373985783305612.post-58622566236962026862009-01-12T21:46:00.003-05:002009-01-12T21:56:52.807-05:00We've been home!Sorry I haven't posted! We got home from CHOP 1/7/09 around 7 p.m. That first night was bliss! No nurses barging in every hour to check something! In the morning, she was a little tender since the pain meds wore off. I set my alarm to keep her getting Motrin and Tylenol on their respective cycles the next night. <br /><br />However, the morning of 1/9 - at 2:15 a.m. -I awoke to the all-too-familiar sound of Mikaela puking!! UGH. I was frantic! Kurt held her in the bathroom waiting for her to empty her belly like usual and I was packing a bag to head back over to CHOP. First I called the surgery clinic and the dr. on call told me to wait it out for the next 4 hours. She said to give her clear liquids <em>slowly</em> beginning one hour after she last threw up and see if she is able to keep it down. By this time, I went back in the bathroom and she was laughing and playing peekaboo with Daddy! This is a good sign! So the bags were by the door and I sent Kurt to bed. I began giving her Pedialyte at 4 a.m. and she drank 2 ounces by 5 a.m. I put her back to bed at 5:30 a.m. Hmmm....what was that about??? Could the Motrin have been too hard on her belly? I gave it to her last at 8 p.m. and she had drank a bottle just a half hour prior. Who knows? I'm sticking to Tylenol alone from now on. So far - so good! <br /><br />This past weekend we just hung home. Her appetite is finally picking back up yesterday and today. I am relieved!! Juliana's pneumonia is gone and so is the ear infection. We are all healthy around here! And to top it off - GO E-A-G-L-E-S!!! How fun???!Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com0tag:blogger.com,1999:blog-1944373985783305612.post-42698770844307349022009-01-05T22:40:00.001-05:002009-01-05T22:41:58.618-05:00WhirlwindOkay...where to begin. First of all, I shouldn't even be posting, I should be in bed. But I am afraid that I won't have time to do it in the morning before I have to run out.<br /><br />So...Christmas was not our best. Mikaela woke up from her nap with a fever of 104.8 degrees. Not making it to Aunt Kim's for dinner that's for sure! We did the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">luke</span>-warm bath thing and then alternated Motrin and Tylenol and it gradually came down and continued to do so each day after. She really ended up with just a cold. Mostly nasal congestion but that is clearing nicely.<br /><br />Then, Juliana caught the cold right before New Year's Eve. We did still go to Mikaela's mapping, and explained that she didn't wear the processor as much as we would have preferred because she was so cranky from being sick, she kept ripping it off. Not a big deal, as the new programs were set to accommodate that yet still ramp up to get her hearing speech. Thrilling!<br /><br />By New Year's day, Juliana was coughing her head off! I took her to the pediatrician on the 2<span class="blsp-spelling-error" id="SPELLING_ERROR_1">nd</span> and sure enough, she has pneumonia!! Who knew???? I was not expecting that!<br /><br />So we head home and Mikaela eats lunch at noon. I tried a new food for her...Pasta Vegetable Medley. (Still stage 2 because of all of her GI issues.) Only gave her two ounces mixed with oatmeal baby cereal and her <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Alimentum</span>. She went to bed around 12:45 or so. By 2 p.m. she was up and not feeling herself. Kinda whimpering and cranky. Kept pulling her legs up. I thought, "Oh, no! She's having a bad reaction to the new food! Why did I give it to her???" I called the pediatrician, and she gave me some suggestions that worked initially. That however was short lived. By 6 p.m. she began the puking episodes. I was beating myself up for giving her that food!<br /><br />She continued to puke through the night. We went to bed around 1:30 a.m. and thought the worst was behind us...Not so! At around 3:30, she woke up and threw up again...(I was wondering what she could have left in her poor little belly.) I turned on the light and realized that it was that crazy green color like when she had the bowel obstruction at 3 months. No. This isn't happening! She fell back to sleep in about 1/2 hour. So did we. We then got up with her around 7 and she threw up again. It wasn't as bright a green, so I thought maybe there was an obstruction and it '<span class="blsp-spelling-error" id="SPELLING_ERROR_3">unkinked</span>' itself. (I think this can happen.) So we called the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">ped</span> and she told us to try different things to settle her stomach with the hopes of her not getting dehydrated. To little avail. I thought we were getting somewhere when she kept down ginger ale for about 2 hours. She wanted to eat or drink so badly. If she saw a <span class="blsp-spelling-error" id="SPELLING_ERROR_5">sippy</span> cup or bottle on the table, she about sprung out of our arms to get to it. So, I got a little cocky and gave her some formula. Well, BIG mistake. That started coming up around 3 and didn't stop. By 3:45 Kurt had decided enough was enough and we had to head to CHOP. He was worried about dehydration and another sleepless night. We just wanted her to get some relief and us all to get back to normal.<br /><br />Rather than try to find care for Juliana, I suggested we divide and conquer. After all, she was fighting pneumonia and who would want that responsibility?? I was volunteered to be the one to take the baby to the hospital. Besides....when they are sick they really do only want their mommy. I regretfully agreed and said, "well you hold her...I have to shower first!"<br /><br />By 4:30 I was leaving to head over. I had thoughtfully covered Mikaela in the car seat with a towel, one of the chucks I stole from our last visit to the hospital and a bib to catch any potential vomit during our drive. She thew up as we passed the <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Bellmawr</span> exit. Uh...no where to pull over on 295, so onward over the Walt Whitman. University Ave is really not far down, so we're almost there. I pull in at 5:02 and head to check in. She threw up again! Now I began to cry a little. This was too much with only 3 hours sleep and now everything was all wet, stinky and I felt so bad for my baby!<br /><br />I finally get a 'room' in the ER portion at 6 pm. The 5 billion questions began. Most of this stuff is in her enormous file they have anyway, but we have to do it all again. They took an x-ray of her abdomen area. A short while later they came back and said they had to take her for an ultrasound of her belly to see if they could see more or better or whatever. Then that wasn't good either because of some gas on her left side. They asked if they could put the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">NG</span> tube in and insert dye to be x-<span class="blsp-spelling-error" id="SPELLING_ERROR_8">rayed</span> again in the hopes of showing or confirming clear bowels. Sure. Put it in and get it done if that's gonna help her get better. By this time it's 9 p.m. and I'm starving. The nurse said she would go and stay with her the whole time because I had already ordered food to be delivered. My food came at 10 and she was back by 10:15. By 11 p.m. the resident came in and said that she did great for the x-ray and that someone from surgery would be down to talk to me. WHAT?? Surgery? Why do I need to talk to them? I thought we were here to just get some fluids, maybe a little something for the nausea and be on our way back home. The surgery people were there in two minutes and said that she may have a small obstruction and lots of times these things fix themselves. (See....I thought so!) They were going to admit us and then have the General Surgeon make the call in the morning.<br /><br />I didn't get up to the surgery floor until 2 a.m. I have to tell you ...I was <em>beyond</em> by that point! There's really a whole sub-story here, but I'll save that for another time. I questioned this delay last night and one of the nurses pretty much confirmed that someone forgot about me for 3 hours.... You have to be joking! (I will be writing a letter to someone in the hopes this never happens to anyone again.)<br /><br />So, the surgeon comes in at 6:30 or 7:00 a.m. - something <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">ridiculous</span> like that since I only went to bed 4 hours earlier and only got a scattered 3 hours the night before. He wants another scan done to see if the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">barium</span> has moved into her colon and the blockage had corrected itself. That happened at 8:05. (I knew it would be a while to hear back because he had a scheduled surgery at 8) He came back to me around 9:30<span class="blsp-spelling-error" id="SPELLING_ERROR_11">ish</span> and told me he had to go back in. I was bummed, yet relieved that we did choose to go to CHOP for "fluids" and at least she would be getting some relief.<br /><br />I am going to sum up at this point because I must sleep. I have to head back over there in the morning. Kurt was kind enough to sleep there tonight and let me sleep in my own bed.<br /><br />She did great, the surgery was a success. There was an adhesion, aka scar tissue, from her last bowel surgery and the intestine just kinda flipped around the scar tissue and twisted a loop that closed off anything from moving through. They went in through the same incision and it didn't have to be any bigger. She was on morphine for the first 24 hours, but now she is on something non-narcotic to hopefully urge everything internally to wake up and get moving again. With these types of surgeries, they keep you in there until lots of things begin to happen. First she must begin to pass gas and move her bowels. Then we will feed her the clear liquid diet and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">measure</span> output for a while. Then I think they'll want me to try food and see how that goes through. I can't imagine I'll be home until Friday or so. Good thing I didn't have too many plans this week!! :-)<br /><br />Thanks for reading all the way to the end! Oh, yeah....Happy New Year to you. May this be the only bump in our 2009.Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com5tag:blogger.com,1999:blog-1944373985783305612.post-24515485899953387772008-12-23T21:37:00.007-05:002008-12-23T23:05:07.863-05:00Christmas came a little early<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbqdAwq4LQ-ZItsMRisLdA3H6jJLskqrCgMrprZQqRKJ69qBBo_oI3GO1s2sI7kh53EKx8iQWgg8R-4RLLPQn2g6hBtbrlwjZ7K244At_d80DNJgUi74IdzXlt9S9N7h0FxEvKJ51wisRI/s1600-h/IMG_3079.JPG"><img id="BLOGGER_PHOTO_ID_5283202377472766530" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 289px; CURSOR: hand; HEIGHT: 222px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbqdAwq4LQ-ZItsMRisLdA3H6jJLskqrCgMrprZQqRKJ69qBBo_oI3GO1s2sI7kh53EKx8iQWgg8R-4RLLPQn2g6hBtbrlwjZ7K244At_d80DNJgUi74IdzXlt9S9N7h0FxEvKJ51wisRI/s320/IMG_3079.JPG" border="0" /></a><br /><div><div><div>On Monday, December 22, we headed over to CHOP for our equipment orientation....And we came home activated! Don't get excited!! She still won't hear the Christmas carols this year, or the chaos of mealtime with the family. At this time, her programs are so soft, that she isn't even getting speech. Just some environmental sounds. I am guessing, the programs are slightly above what her natural unaided hearing is/was. (As you know, she no longer has any hearing in her implanted ear.)<br /><br />We did capture it on video and it was extremely uneventful. Not one single response that an untrained viewer would say, "<span class="blsp-spelling-error" id="SPELLING_ERROR_0">ooooh</span>, she must have heard that!" She didn't look up to the clanging, light up toy in the box when he played the tones and beeps. She didn't look up once as the audiologist went through the ling sounds when he turned the microphone on and was speaking to her. Nothing at all. She was very engrossed in the toys and we are assuming since the 'sounds' are now electrical impulses, her brain has no idea what to do with that information coming in yet. However, I am happy to have the video as a baseline to see her progress through time.<br /><br />So we start out on P1 (program one) volume set to zero. Zero doesn't mean there isn't anything happening, it's just the lowest setting. We then can bump it up as she is tolerating it. Once she gets to 9, and is comfortable with that amount of stimulation, we can move to P2 (program two) and start the cycle over again. It is expected that we will spend about two days on each program before we move to the next. We have 4 programs set on the processor, but all of them are really, really soft. This first week is just so she gets used to the equipment. We don't want to scare her or have her dislike the processor. She ultimately needs to bond to this equipment.<br /><br />Well, when they tell you the challenge will be keeping it on her head, they weren't kidding! What a nightmare! I am exhausted! :-) For those of you who know Mikaela, she is such a head rocker! (Side to side, not front to back - in case you don't know her.) So the darn thing flops off all the time. Yes, yes, I know.... <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">toupee</span> tape. Did that, not a big help! Yes, I do have the snug fit on there as well. My, my, my.... I now have another full time job.<br /><br />Yesterday, her first day of activation, was not the best because of her being so tired. We had to be ready and leave for CHOP by 7...she usually sleeps until 8 or so. Not to mention she slept like doggy-do the night before. Needless to say, she was really cranky and the new electronic stimulation in her head must have pushed her to the edge. Lots of tantrums and real tears. Today was a bit better. Only a few meltdowns in the morning. Once she woke up from the afternoon nap, she was more like the Mikaela we have all grown to love so dearly!<br /><br />Our TOD came this morning and reminded me to start the processor at P1 Volume 0 every time I put it on her after sleeping. So, first thing in the a.m. and same deal after nap. It's like turning the bright light on first thing in the morning, only electronic impulses inside your head....can you imagine it? In <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">addition</span>, I do turn it on first, then put it on her. The processor model that we chose does have a 'ramp up' that some recipients say really bothers them. So, at this time, I am choosing to avoid it.<br /><br />Even though she can't hear speech with the selection of programs we have, I have begun <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">narrating</span> my entire life. I have adopted the concept that today is the first day with my new ears. Every sound in the house is new.... I am attempting to listen as Mikaela is listening. However, since I have the knowledge of what the sounds are, my job is to point to my ear and say, "I heard that! Did you hear that??" Then I tell her what made that sound, pointing to it. "It was the chair, or It was the telephone, or It was the timer on the microwave, or It was the dog, Otto, etc." Like I've said before, thank God I am such a talker! It will serve Mikaela well.<br /><br />We are taking the first baby steps towards the 'learning to hear' portion of Mikaela's Path. Inch by inch. All in her perfect time.</div></div></div>Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com3tag:blogger.com,1999:blog-1944373985783305612.post-37523780555018454462008-12-15T11:49:00.005-05:002008-12-15T12:21:43.464-05:00One week post-opThankfully, this has been a very quiet week as Mikaela has been recovering. She did get sick yesterday - kinda thought we were past the vomiting. It was only one episode and then she slept and was fine as she woke up.<br /><br />She seems to be healing very nicely. One time when I washed her hair, I forgot about the site and scrubbed her scalp maybe a bit too vigorously. She cried a bit, but got over it very quickly. I wonder how that will go through time. I wonder if it will bother her as she grows or will the site be numb. I wonder if she will just 'get used to it'. <br /><br />Finally, I am beginning to experience the 'excitment' some people have been asking me about. I am excited for the possibilities that may be held for Mikaela. I am excited to watch her learn. ...Learn things I took for granted with my other two children. I am excited to narrate my entire life to her. Thank Heaven I am quite the talker! ;-) <br /><br />I know the CI saying is, "Keep your hopes high and expectations low" however, that is not really my nature. I am a hope for the best and expect the best kind of girl. I also know that Mikaela's path will be <em>her</em> path. (Hence the name of the blog.) I will not compare her to others. I will be patient with her and honor her progress as <em>her</em> progress. <br /><br />I am excited for the New Year and her new hearing abilities. Thank you for taking this next step with me and your loving support as we begin the walk.Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com3tag:blogger.com,1999:blog-1944373985783305612.post-65666381475161201632008-12-10T12:19:00.013-05:002008-12-10T12:39:01.499-05:00Mikaela with the bandageHere are some pictures of her sporting her post-op head gear. Temporary....very temporary. I also have pictures of her once I took it off. It cracked me up the way her hair poured out the top!<br /><br />Gave her a bath and washed her hair today....amazing! What a gem she is.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYUrC1SLXJRXv_hyphenhyphenQphN7xRS6hYdncn_2zlRu4LVm6BH7tprUKQ-jSvV2PzxfgJeXWdTbHrb-1V8YNlj4fULau7PZjjZiXO0uCYSWF3vXCMDuromOEe1ljkD0ogTv4bMlHAmEVhQGpOm4-/s1600-h/IMG_3026.JPG"><img id="BLOGGER_PHOTO_ID_5278213629006069794" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYUrC1SLXJRXv_hyphenhyphenQphN7xRS6hYdncn_2zlRu4LVm6BH7tprUKQ-jSvV2PzxfgJeXWdTbHrb-1V8YNlj4fULau7PZjjZiXO0uCYSWF3vXCMDuromOEe1ljkD0ogTv4bMlHAmEVhQGpOm4-/s200/IMG_3026.JPG" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkQVNPDR_hWBwcZhJgXvLNZYhatqK1CzyBIkF4kHMMIIhgeYA522Clz_vXv3KPhsF6aQCig7s7QhTcEaTj2Yq2dxbQaqBHneOzshrkGAQcme_suJ3cU6Y7cvnHdoupB1U6MQno9ktNzipm/s1600-h/IMG_3045.JPG"><img id="BLOGGER_PHOTO_ID_5278216963576558050" style="WIDTH: 200px; CURSOR: hand; HEIGHT: 150px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkQVNPDR_hWBwcZhJgXvLNZYhatqK1CzyBIkF4kHMMIIhgeYA522Clz_vXv3KPhsF6aQCig7s7QhTcEaTj2Yq2dxbQaqBHneOzshrkGAQcme_suJ3cU6Y7cvnHdoupB1U6MQno9ktNzipm/s200/IMG_3045.JPG" border="0" /></a><br /><br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxt4BXpIsLTt91smsPNqHvXVowX1mg_jSgjmvfPiHWpoAFy82f8AytmX338-vQLep-j7nai3bchg5uW1yd4N_MhOJ875eXciVhDFiqvxwt3zFCfTXcWi3i7Roh2YOLEr0li9fVRkBJesTV/s1600-h/IMG_3046.JPG"><img id="BLOGGER_PHOTO_ID_5278214608516042386" style="WIDTH: 200px; CURSOR: hand; HEIGHT: 150px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxt4BXpIsLTt91smsPNqHvXVowX1mg_jSgjmvfPiHWpoAFy82f8AytmX338-vQLep-j7nai3bchg5uW1yd4N_MhOJ875eXciVhDFiqvxwt3zFCfTXcWi3i7Roh2YOLEr0li9fVRkBJesTV/s200/IMG_3046.JPG" border="0" /></a> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGfOwhsT8rA8gCAV3ADNUqJKAXajfKPouKvrR_6CO1Jn5GyT6wQBTvhTLiGSujVHqWomcqTBjN2KLYBKeUs3kkdt6U5AK0RN_9McKb9Ljwk-SNYOogaRqKOe7UOx_zsvusar7cylelGriJ/s1600-h/IMG_3043.JPG"><img id="BLOGGER_PHOTO_ID_5278215178096362354" style="WIDTH: 200px; CURSOR: hand; HEIGHT: 150px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGfOwhsT8rA8gCAV3ADNUqJKAXajfKPouKvrR_6CO1Jn5GyT6wQBTvhTLiGSujVHqWomcqTBjN2KLYBKeUs3kkdt6U5AK0RN_9McKb9Ljwk-SNYOogaRqKOe7UOx_zsvusar7cylelGriJ/s200/IMG_3043.JPG" border="0" /></a>Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com1tag:blogger.com,1999:blog-1944373985783305612.post-6977442198754498872008-12-09T12:31:00.005-05:002008-12-09T19:34:42.893-05:00Implanted Yesterday 12/8/08Whew...what a day! <br /><br />I have to say, for me, it was really hard!! <br /><br />This time, our arrival was scheduled for 8:45 a.m. Okay, better for us parents. Particularly, Kurt! He tends to be more of the night owl and this was waaaaayyyy better than our last scheduled arrival time of 6:15 a.m. <br /><br />We arrived right on time. Of course everything went much slower this time!! We didn't get taken back to the pre-op area for 45 minutes. We then hung out there......forever!! Honestly! The OR nurse came for her at 11:55 a.m. - another two and a half hours! Holy cow! Mikaela was amazing! She is such an angel! Never fussed or anything. Just hung out on our laps, watched TV. I, however, didn't hold up as well! I was starving! I couldn't eat in the morning - my nerves! Then once we got to the hospital, I felt bad eating when Mikaela couldn't! :-) Silly, I know! I did eat a half of PB&J I had packed about 11:30 a.m. It didn't go down easy...kinda forced it. Nerves!<br /><br />We went over to the surgery waiting area and began reading. Kurt is reading Deaf Again - which is a really well written book about a local man who was born hearing, lost his hearing, went through lots with his journey with hearing aids and being in the hearing world. Upon reaching late teens/early adult, he chose to live fully in Deaf culture. It's really good! I am reading The Christmas Sweater by Glenn Beck. Loving it and almost finished.<br /><br />Anyhow...back to the story...We were told that the surgery would take an hour and a half. Kurt was checking the board early and often! I didn't begin to check it really until 1:30. Then at about 1:45, we got a call from the surgeon. He said surgery went very well. Mikaela did great. He was able to get full insertion of the electrodes. Immediately, as we hung up, the CI audiologist was entering the area and filled us in as well. He said he fired up the implant and got readings across all frequencies. This means that placement was good and we are ready for the next step. Activation. Our appointment is New Year's Eve! <br /><br />So, now we had to wait to go back to see her in recovery. They brought us back around 2 p.m. She was not good! Very cranky from everything. Real tears. She kept reaching up to her ear. The nurse gave her a shot of morphine in her IV and that stung going in. UGH! Mama was not happy. (This is the part that was so hard for me.) She then fell asleep until 4 p.m. She was a tiny bit better when she woke up - not much. I was nervous about driving home and that she might throw up. Kurt and I were dragging our heels getting out of there. We left around 5:20 or so. Sure the height of rush hour in the city and the South Street bridge closed yesterday as well....(for 2 years). Surprisingly, we were back in the area by 6:15.<br /><br />Mikaela wanted to be held once we got home. The nurse said to start her on clear liquids, so we did. Apple juice watered down. She drank a bunch! 9 ounces or so. I tried to lay her in the pac-n-play in the family room because I was not comfortable leaving her 'unattended' in her crib! What if she pulled on the bandage or had a nose bleed or something (The nurse said that could happen as things drain and what not.) Anyway...she wanted no parts of the pac-n-play! I took her up to bed and within minutes she was snoring! Thank God. For many things today...<br /><br />Throughout the night we were up lots. I set my timer to give her pain medicine every 5 hours. Then I woke up every time she moved a muscle. Otto decided to sneak upstairs around 1 a.m. I sent him packing back down to the kitchen. As I drifted off to sleep again around 1:20, I hear him sneaking up again!! What is the deal? That is so not like him. At 4 a.m. we had to change EVERYTHING. Because of the IV fluid and the 9 ounces of juice water I gave her...we had quite the leak! Gotta love scrubbing down the crib mattress at 4 a.m. Needless to say, I am looking forward to getting to bed at a reasonable time tonight! By 9 at the latest, I'm certain!<br /><br />Today, Mikaela woke up much more like herself! The swelling in her face came down. She wanted to reach for and play with her toys. She ate all normal meals today. Well, normal for her. I would say she's about 85-90% back to herself. Just not as much 'talking' and laughter as usual. I am hoping to see that back tomorrow or so.<br /><br />After her lunch, we took off the bandage. Grandmom was here and captured it all on pictures - as did I. The incision looks incredible. They barely shaved any hair. There isn't any swelling to speak of. So, it went as well as it could. :-) I'll post them soon.<br /><br />Well, I am going to sign off for tonight. I will keep you all updated as best as I can. Thank you for following Mikaela's path.Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com5tag:blogger.com,1999:blog-1944373985783305612.post-71581101793570418592008-12-02T13:04:00.003-05:002008-12-02T13:44:14.938-05:00Moving right along...On Saturday, Mikaela signed MOM!! Okay, she only did it 3 times that day and hasn't done it since, but she DID sign it!! She was in her neglect-o-sphere (aka Excersaucer) and wanted out. (I usually sign as I say to her, "Come to Mama" whenever I take her out. Same thing when I take her out of her crib, highchair, car seat, stroller, etc...) As I was walking over to her she signed 'mama'! Her hand was open, facing out, and on her chin!! She had her mouth open, which I am thinking she was imitating me....like she was speech reading! <br /><br />Some other cute things she is doing: points to head, nose, teeth. She plays peekaboo. She imitates a silly song I sing when I feed her. She also imitates 'woof, woof, woof' when she sees Otto or any dog for that matter. (It's like "uh, uh, uh" - but with closed lips) Then when she sees Puca, (our cat) she imitates a meow sound. (For her, it's like "mmmmmmm" - like a whine, kind of.) I also have a bunny on her highchair and when she sees him, she imitates 'hop, hop, hop'. (It sounds just like her woof, woof, woof.) But she has the right rhythm down. Then when I pull over the butterfly on her highchair to which she imitates my 'wheeeeeeeeeee'. (Yep, you guessed it, it sounds just like her meow imitation.)<br /><br />The ASL signs she knows and has used: Head, Nose, Teeth, Dog, more, milk, eat, light, mama, the letters "F", "D", "L", and "E". She knows receptively, but hasn't yet signed them herself: Cat, Daddy, Sister, Outside, Flower, Tree, Butterfly, Bird, and I am pretty sure she knows more. I think she understands some phrases I sign to her, like "Change your diaper, NO, Take a bath, go in the car, Ready to eat, Go to sleep now," and things like that.<br /><br />Physically she is progressing as well. What she can do: On her tummy, she pushes her self up and locks her arms. (She can't get into crawling position yet, but she's working those legs under.) She pushes herself backwards, spins around, and she can roll from belly to back, but doesn't like to. She can also roll from back to belly as well, and - doesn't like to. She cannot get from sit to crawl or belly position and likewise cannot go from belly to sit. She is, however, making progress towards that with some assistance from me and/or her therapist. She cannot pull to stand, but does quite well if I stand her and cruises along the ottoman. <br /><br />Overall, I am very happy with how she is improving!! Everyday is so exciting and I don't take anything for granted! Looking foward to noting 'hearing improvements' here as well soon! Surgery is less than a week.Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com0tag:blogger.com,1999:blog-1944373985783305612.post-22337208231325111832008-11-25T14:19:00.003-05:002008-11-25T14:32:38.846-05:00EP Clinic Results and New Surgery DateWell, yesterday was interesting to say the least. The Dr. came in and asked, "Why am I seeing your daughter?" I was a bit taken back. I suppose because of all the scampering and rushing around to have this arrhythmia looked into, her file wasn't the most complete it could be. So after a <em>brief</em> exam, he said Mikaela was perfectly normal. Her adjusted QT was normal, as was every other reading in her EKG. Subsequently, he heard NO murmer whatsoever. Nor clicking for that matter. hmmm. All that was recommended was that we come back in 6 months for a repeat EKG. Sure. I'm happy to do that. (Appointment is scheduled for May 5th.)<br /><br />I am curious how two people could look at the same EKG, listen to the same heart and have two varrying outcomes. <br /><br />Anyway. My NEW pediatrician feels that because of all the precautionary steps they took, (an echo cardiogram, referring Mikaela to the EP Clinic) and since the Specialist cleared her for surgery, she feels confident that all is well. She, like Kurt, believe that they were just being extra cautious due to the hearing loss. I understand that and always a proponent of 'better safe than sorry'. Maybe I was looking for a better explanation of why one week ago there were red lights, sirens, and a mad rush to Cardiology. Last week no cardiologist would sign off on her EKG. One week later, with the same EKG, all is fine. I suppose the normal results from the echo cardiogram is what maybe made the difference this week.<br /><br />The new surgery date is December 8th.Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com1tag:blogger.com,1999:blog-1944373985783305612.post-85446391347110486152008-11-19T19:42:00.002-05:002008-11-19T19:49:05.439-05:00Appointment UpdateI received a call about 3:00 p.m. this afternoon. I have an appointment in the EP Clinic at 1:30 p.m. Monday!!! YIPEE! <br /><br />Ironically enough, I had just drafted an email to Dr. F. asking for intervention on our behalf. (The thought of waiting until March had me totally freaked out!) I was actually proofreading it and ready to press send when my cell phone rang. Kurt was working using the house line. Luckily my cell phone was in the files. In addition, I happened to have it nearby because I <em><strong>rarely</strong></em> answer it! <br /><br />We'll keep you posted on what we learn! Have a wonderful weekend with your families.Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com2tag:blogger.com,1999:blog-1944373985783305612.post-13896774300886026842008-11-18T12:30:00.010-05:002008-11-18T13:52:34.162-05:00CI Surgery Day 11/17/08....um....not so much....As you know, we were scheduled for Mikaela's CI implantation surgery yesterday. Our arrival time was 6:15 a.m. Oye! Kurt is definitely not a morning person and I am...but not THAT early! We managed to arrive at 6:30 to the check in desk. Not too bad...<br /><br />We got called back to the prep area and the nurses took the vitals. The anesthesiologist (Dr. H.) walked by with a big Dunkin Donuts cup of coffee. Good! Let's have everyone awake and on their best! About 7:30, Dr. H. came in and said he wanted to repeat the EKG. That took about 7 minutes to have them come back, hook her up and take it. During that time, the surgeon came in, marked Mikaela's right ear with an "X", explained about post op expectations and stepped out. Then the anesthesiologist came back in at a moment that Kurt happened to step out to the men's room. He asked where Kurt was and then said he'd be back to talk to us when Kurt was back. I said, "Why? Is the surgery off?" He replied yes. When I asked why, he said...."I'll tell you when Kurt gets back." He then went off to the nurse's station to let them know the situation and to begin prepping the next patient.<br /><br />By this time, Kurt returns and I say, "The surgery is off." First he said, "Are you serious?" To which I responded I was. He then was like, "What?? Why?" I said I didn't know and that the anesthesiologist would be back to tell us why when you return from the men's room. He was desperately searching my face for some kind of smile, thinking there must be a punchline in here somewhere....nope. I was serious.<br /><br />The anesthesiologist returned. He regretted to inform us that he didn't like the EKG that was taken 1/31/08. He explained to us about a QTc reading. This occurs during the repolarization of the heart. He described it as such: The heart constricts to beat, then relaxes, then it resets itself electronically to zero to accept the next electrical impulse to cause the next beat. Mikaela's heart was taking a bit too long to reset to zero. The repeat EKG from surgery day 11/17/08 was better, but because of the first one, he wanted her to be seen by a cardiologist. I told him that Mikaela had surgery on 1/31 when the first EKG was taken. He was shocked. He said, "She had surgery with <em><strong>this</strong></em> EKG?? I explained that yes, it was a life-threatening situation and they had to operate to save her. He then noted that emergency and elective surgeries have different parameters. There was some conversation of regret that we were not notified earlier....(um....how about like maybe back in January/February when we were in the hospital for 3 or 4 days!!! - Could have been good!!) He referred us to a cardiologist that agreed to see us that day since they felt bad for the lack of earlier notification.<br /><br />Our appointment was scheduled for 9 a.m. Of course it took this doctor about an hour to see us and Mikaela had luckily fallen asleep. (We'll call the Cardiologist Dr. F. because it is getting too confusing and takes too long to type when I refer to them by degree) He took background information from us since Mikaela had an empty Cardio file. Then he listened to her heart, looked at the two EKGs and shared with us his thoughts: He said he heard a "very, very slight murmur" and "some intermittent clicking." The clicking may or may not be a valve. It may be that due to her age and the walls around the heart not being as developed as they are in older children and adults, he may just be hearing more than typical. Dr. F. wanted to have a complete work up on Mikaela and managed to finagle the schedule for an immediate echo cardiogram.<br /><br />We were in that office by 11 a.m. Mikaela did really well, considering it was a 40 minute test and she hadn't eaten since 7 p.m. the night before! Once the technician took the portion of the study from the lower part of the heart, she let us feed her while she took more pictures. That helped a bit, but we had to take a few burp breaks!<br /><br />Back to wait for Dr. F. to give us the preliminary results. He said, there is a syndrome that is called Long QT Syndrome that can present with deaf individuals and Dr. F just wants to rule that out. He said that today's EKG was much more 'normal' but there was one measurement that was "borderline normal" and he wants to have a complete study done before he would okay a surgical procedure. Dr. F. said if a normal hearing child had the same EKG it probably wouldn't have raised a flag. But due to the hearing loss, he wants to be certain. I can appreciate that. To obtain confirmation, Dr. F. then gave us the name of another doctor who specializes in arrhythmia in children and noted on the paperwork to schedule a visit 'ASAP to the EP Clinic." Of course I had no idea what EP stood for and Kurt and I were making up all kinds of things! :-) Like....'Early Prevention' and 'Enlarged P***s'.... It actually means Electrophysiology.<br /><br />At the desk as we were leaving, the clerk tried to schedule an appointment for us, but they were too full. I called when I got home and the secretary at the EP Clinic wanted to get the scoop on Mikaela's file, talk to the two docs and get back to me. She didn't get back to me by 4:30 p.m. so I tried again. They were already gone for the day. So guess who called at 8:04 a.m. this morning....yours truly!<br /><br />The secretary was really nice. But at this time, the doctor to which we were referred (Dr. S.) doesn't have an availability until March. The partner (Dr. V.) <strong><em>may</em></strong> be able to reschedule something and get us in there in December. The secretary will check with them and get back to us. Sure....I suppose I'll check back in on Friday to see if we can at least pencil something in!!<br /><br />I am wondering if I should find another pediatric EP specialist and see if I can get something done sooner. CHOP can send over Mikaela's chart...they can do their thing....send results back over to CHOP. Or...will this just muddy the waters? I can be a <em>little</em> patient, but not for long. Kurt thinks we need to just 'let the system work'. I am not feeling so confident in the system at this time considering Mikaela's EKG sat in her file since January 31. Maybe the system needs some oversight by ME!<br /><br />Sidebar: I am transferring to a new Pediatrician today. I figure surgery isn't going to take place before the records get over to the new Ped. I'll update the insurance company and there shouldn't be any problems. (Like that positive intention, there???)Faithhttp://www.blogger.com/profile/03380518038991950749noreply@blogger.com7