Rachel Nyberg is a beautiful 3 year old child who nearly drowned on Thursday, May 5th 2005.   RachelNyberg.org has been setup to provide simple updates on her condition & prayer requests of the family.     It also allows for encouragement & donations towards her long term recovery. LEAVE A NOTE OF ENCOURAGEMENT FROM: NOTE: SPAMGUARD: What is 4 + 1= Most Recent Notes Feb 19th 2010 Rebecca Ahlstrand How is Rachel these days? Apr 23rd 2009 Anonymous Rachael will be in my prayers and my heart from this day forward. We believe, We receive, God be with you, Amen May 16th 2008 Ron Remember, Jesus loves you and will never leave you. May 16th 2008 Anonymous Remember, Jesus loves you and will never leave you. Apr 9th 2007 Susan Found your site through a search for Bailie Zille. I care for Bailie at night. It's wonderful to read all the encouraging updates. Keep up all the good work. Few people realize how much work and dedication, and love, it has taken on your part for Rachel to reach all her goals. God bless you, and all your children! Jan 25th 2007 Anonymous hi Nov 24th 2006 Tim Gillen Hello. Your story is amazing. I'm very encouraged that you have taken time to encourage us since Everett's accident. You are very special people. The progress Rachel has made is encouraging for us as we see small steps of progress with Everett. Being able to lift her head up to a forward position and identify her colors is awesome! Praise God :) Nov 15th 2006 Deb W. That is SO exciting about Rachel learning her colors! How GREAT!!! Oct 18th 2006 Caradie Way to go big girl!!! Oct 16th 2006 Anonymous You are a super mom! Oct 11th 2006 Joanne Rachel is beautiful and full of gifts to her special family. My prayers are with you. Sep 30th 2006 Anonymous Cute new pictures! Sep 8th 2006 Anonymous Hey are you guys connected with the CADI waiver, or the MRRC, and the Family Support Grant? Sep 3rd 2006 Caradie What a great idea for the spam gaurd. Sep 3rd 2006 The Durbins Hi Sara! Thanks for the updates. I just added a Spam guard to your notes, now people have to answer a simple math question, to protect against spammers. Aug 31st 2006 The Braaren Family Congratulations on your new baby. It was so much fun to see the pictures of the kids. Hopfully we will see you all at Christmas. Love from Tonje, Stian, Inger-Lisa and Arne Aug 30th 2006 Elaine It was so great to see you guys with the beautiful baby. I just love to see Rachael smiling in the photos. Hope to see her do it in person soon. Aug 20th 2006 Ellie Congratulations on your new little one! The pictures are so adorable of all your children! Aug 15th 2006 Sue Peterson The pictures are adorable!! Rachel sure is smiling a lot more now! What a beautiful family....may God continue the healing process! Aug 8th 2006 Elaine Yea! Welcome baby Kaleigh! What joy she will bring to your family. I hope to see her soon, Sara. How about a posting on what you still need for baby. Like a million diapers?! My Love and Prayers are with you all. Aug 7th 2006 Dan Deb and Ethen Welcome Baby! We'll be up ASAP to see your new little girl!! Congratulations! Aug 7th 2006 Brooke, Austin & Isaac Congratulations!!! Aug 4th 2006 Rebecca Ahlstrand Hello everyone. We hope to come and pray for Rachel on Monday if the baby waits a little longer. Blessings! Aug 1st 2006 Caradie My guess is Aug 3rd. Shoot for a 3rd like Corbie Jul 31st 2006 Anonymous Should be August 1st... Simpler to remember! Only Latest 25 notes shown. To view all of them click SHOW ALL News Updates Nov 28th 2006: New Site Soon this site will be switching to a new format. This old site will still be accessible from a link on the new one. The new one might not have the video or photos this one does for quite some time so if you'd like to look at them in the future you'll have to look at them through the old site. Nov 25th 2006: Quick update Therapy has had a lot of the same activities. She's been sleepy around therapy time because she's getting up at 3 or 4 am. But she's still getting a lot of activity in the day because her night nurses are getting her up in her stander and do activities that encourage her to learn her colors, letters, numbers and anything else she may be secretly absorbing. Nov 17th 2006: Sleepy Week For therapy and school Rachel was pretty sleepy due to the more concentrated Klonopin. But in physical therapy she met one of her short term goals! She was able to lift her head up from a forward position. While Emily was watching her she did it once on her own after she had a small seizure but to make sure it was her and not her tone kicking in, Emily put her head forward again and Rachel was able to lift it up! So now she's met all of her speech therapy short term goals (and has all new ones to work on) and she's starting to meet some of her PT ones as well. Nov 15th 2006: Wednesday I didn't hear how therapy went today yet but she had a baclofen pump refill (she gets them every 6 months) and we turned down the amount she gets to only 50 (micrograms or some teeny tiny amount). A lot of people need a thousand units and it's great that Rachel needs so little! She's still kind of floppy so when she's a little stiffer she can use the tone to help her hold her head up or do better in her therapy activities. Nov 14th 2006: Monday Rachel's Klonopin is still pretty strong, she was sleepy for therapy today and when her speech therapist listened to her lungs she thought they sounded pretty noisy so Luke and Emily brought her upstairs to see her doctor. It's nice that her general pediatrician is in the same clinic as her therapy. He thought it was just a cold but we used the time to get her a flu shot. We have nine days worth of Prevacid so we don't have to worry about that for a little while. I didn't pick up on this but my mom pointed out that if she can tell the difference between a yellow block and a blue block she must have learned her colors. I hadn't really stopped to think about it. She didn't know her colors before the accident so at some point she must have learned her colors from the nurses going over them with her. Nov 12th 2006: Crazy in Rachel land Life's been a little crazy over here. Her prevacid's been held up again and she hasn't started throwing up yet but last time she went without, she was throwing up for a week until it was all straightened out. The problem with Rachel having a drug that's available over the counter is we have to get it authorized every year or six months. She gets a special prescription version that dissolves so she can get it through her g-tube. I didn't get a chance to find out from Emily how school went on Thursday. On Saturday she had a new bottle of Klonopin so she slept all day long. We have thing to put on the bottle so that we can draw it into the syringe while it's upside down so hopefully that will help it not be so varied. Then today it was fun to have her choose what we did. I would have her decide by making a noise after I repeated the option she liked best. (She likes the book about babies better than the book about colors.) She was mad when I put her down but she smiled when I put her sister down by her. I've also brought her stroller seat upstairs to set in a smaller base that's easier for upstairs. The wheels swivel in any direction so it's easier to maneuver indoors. She's supposed to be sitting up and in her stander more and now that we'll have new staff soon I want to try to start the good habits now. Nov 9th 2006: Therapy and Baby Belly Laughs Rachel did well in therapy. We're at the bottom of a bottle of Klonopin so she has a little more tone and was able to do more and hold her head up even better. They practiced rolling not just side to side but all the way around. In speech they had Rachel be in charge of building a tower of blocks. They held up a blue block and a yellow block and she had to look at the right color block two different times (to be sure it was purposeful) and then make a noise to tell the speech therapist to put it on the tower. Then of course Rachel loved it when they knocked the tower down. I've been figuring out ways to have Rachel in her stander and chair more often. Her orthopedist said that was the best for her back and hips so before the new PCA and new LPN start I want to try to work it into the daily routine. Karina still won't take a bottle so when she was crying Rachel was also very upset and crying. A few nights ago I was making Karina laugh but it was such a baby belly laugh that it sounded very similar to crying. Rachel looked upset until we told her, no, the baby's happy, the baby's laughing. She still looked pretty concerned as if she didn't believe us but she wasn't upset anymore. Nov 7th 2006: Quick update On Sunday I helped Rachel play laser tag with Hudson. She was so smiley I could tell she was having a blast. No pun intended. : ) Then on Monday Rachel was in the stander that morning and it tired her out so much that she slept through most of therapy. Rachel was very talkative when I got home today and then she fell asleep right away. Nov 3rd 2006: New Pictures The halloween pictures are up. In the awake picture Rachel has her speaking valve on but she can't wear it while sleeping so in the sleeping pic she just has her artificial nose on. Rachel had a good day in school and she would talk this time, but only when the other kids were called on. When the teacher would ask her something.... nope, nothing. She liked talking to OT.... and now I don't remember anything else that Emily told me! I'll have to get more updates when I get home from work today. Either way, the new pics are up. Nov 2nd 2006: Happy Birthday Hudson! I can't believe he is already seven years old! Yesterday Rachel did really well in therapy it's so fun to hear how great she's doing each time. Rachel did really good vocalizing but once they mentioned Daddy, she figured he was there to pick them up and stopped talking, she was done. Her therapist would also hold up two objects and have her look at one of them. She'd even move them to different spots and Rachel would still find them. But Rachel would not look at a box of Kleenex, finally her therapist told her, "Rachel, we're not going to use the kleenex, I just want you to look at it." And THEN she looked at it, the stinker. In PT she made herself swing all on her own. Her speech therapist even poked her head in to see what all the excitement was about. She's laying on the beanbag on the flat swing and using her legs to push back and then lets go and she swings! She did it 9 times and then they asked her to do it for the PT assistant and she did it twice more. So I think for Christmas for Rachel we're going to ask for a flat swing to have at home. Nov 1st 2006: Busy, busy I won't be able to update on Monday's therapy until Tuesday or later since Emily has to leave early on Mondays before I get home from work. And then of course yesterday was Halloween. I got Rachel an adorable fairy costume and I was able to take a couple of pictures and then she fell right to sleep. In therapy the day before they worked on standing with her supportive stuff on but not in the stander and without her knee immobilizers so she can bounce and she did some weight bearing with her legs this way. Emily said Rachel really liked it and when Emily told her what a big girl she was, Rachel held her head up even better. We've been still working on videotaping everything that they do in therapy so we can do it at home. Oct 27th 2006: Thursday Rachel the stinker still will not talk for her teachers and therapists at school. She really liked their idea of punching Emily. She got quite the mischievous grin on her face when they told her to try to punch or throw a ball at Emily. She used her scissors that have a battery and when she pushes her button it powers the scissors. She cut out a cute ghost and then glued on his face. Her teacher prerecorded her talking buttons so that they coordinated with the story and songs during circle time. So when Rachel pushed her button it would say a phrase from the story when all the other kids get to chime in. She also got to pick a song and say "Good morning teacher Dina". Oct 26th 2006: Wednesday's Therapy Rachel did really well again in therapy. In speech they had two audio tapes, a kid tape and a tape of Luke singing. They asked her to look at the one she wanted to listen to, and she wanted the kid one everytime! (She never really liked our singing, she used to pat our cheeks and say, "No, no!".) In PT Emily showed her therapist how to get Rachel crabby enough to make Rachel move her legs on her own. Rachel was reclining in a bean bag on the flat swing and after PT was done for the day and her therapist put Rachel's legs down on the floor Rachel started pushing herself. One of the days when I came home the baby was crying so Rachel started crying so that Emily couldn't calm her down, rarely has she ever gotten that upset. Luke and Emily traded and she got the baby calmed down and Luke calmed Rachel down, but Rachel was not happy that the baby was crying! Oct 24th 2006: Therapy and Stinkerish Activities Whew, sorry so long since the last update but with the long weekend we didn't really have anything new going on. At Monday's therapy Rachel did really well in speech and PT. For speech she's met all of her short term goals. (Looking towards a noise, turning away and making a crabby face when she doesn't like something, swallowing more often are some examples) Now Rachel has started sucking on her tongue in her sleep so we have a pacifier to see if she'll suck on it now that she has the valve. (With a plain trach it's impossible to create suction to keep the pacifier in.) Then in PT she did great lifting her head forward, they sized a walker for her and she didn't try to walk but she did really great holding up her head, she hardly needed any help. Now she's also figured out how to be a little stinker, not only does she seem like she's trying to blow her valve off sometimes but when Emily makes her turn her head to the right she'll pull her head sideways to the left. She won't turn it like she does with her tone (when her muscles tighten all up) but she almost touches her ear to her shoulder with a huge grin on her face so I think the stinker's doing it on purpose! She knows we want her head straight or turned towards us and she pulls it right back over to the other side. Oct 18th 2006: Speech therapy Rachel did really really well in speech therapy today. She did the best swallowing that she's ever done for this therapist and she did great vocalizing and participated in the songs. When they leave a pause in the song, Rachel will fill in with her own little noise. Then they held up two pictures and asked which she liked better and she would look at the one she liked best. We're going to take digital pictures and print them so we can practice this exercise at home. Eventually we'll work on getting her to reach for which one she likes the best and then that will help us get her ready for a communication device. She did so well that they shortened PT so she could keep going in speech. We started video taping therapy sessions we started with how to put on her SMO's, knee immobilizers, benick (torso support), and supportive sleeves. And then she got to roll on the ball so she could have a little fun. Oct 18th 2006: Counter & General Update Hmmm, it looks as if the counter at the bottom of the page has reset itself. It was at 26 or 27 thousand something but now it's at 88. Oh, well. It still amazes me how often people tell me they keep updated on this site regularly. Thanks all! But because of the large number of people that check this site I don't always go over all the frustrating or bad stuff that's going on until I know that it's for sure. Currently everything is pretty good, we're in the process of getting another LPN and PCA. It works best to have three of each, two cover most of the shifts and then one as a back up in case someone calls in and the other can't make it. We have a new home care company and everything has switched over very well. Rachel isn't getting her sleeping med (melatonin) anymore and some of her seizure meds were cut back when we visited her neurologist in Sept. so she's more alert. But she's more sensitive to changes in the Klonopin so we have to ask the pharmacy to mix it with somthing different so it doesn't weaken by the end of the bottle. We all shake the bottle like crazy each time but everytime we get down to the end she acts as if she's not getting enough of the med. I had asked them to mix it the same way the Walgreens in Duluth had done it but now that doesn't seem to be working anymore so I'll have them do it their usual way. Now that we have the talking valve, every once in a while she'll talk up a storm. When Emily had Rachel on her lap and was reading her a story, she was chattering away the entire time. What amazes me even more is how fast she's figured out how to -not- make noise when she doesn't want to. She's still a little stinker. Another funny thing about the valve is sometimes she breathes really hard as if she's trying to blow it off of her trach. A few times (mostly with sneezes) she's unintentionally succeeded and shot her valve across the room! But now she's also getting busy busy busy with therapy twice a week, school one day per week, and school therapy two times per month. We're also able to bring her with us to church on Sundays and you can tell she really watches everyone. All this stimulation in combination with her reduction in meds and being able to vocalize with the valve has been really great for her. Oct 17th 2006: Monday In speech therapy Rachel was sleepy, they read a Sesame St. book called "Shake a Leg". PT was a little late so she just did rolling on the ball and with her speaking valve in she was yelling (in a good way) really loudly. She was very excited. But she wouldn't try as hard at pulling herself forward because she was so focused on breathing and talking. Then she would only pull herself forward when the PT said "Give me kisses!". Oct 12th 2006: Wednesday, Thursday Rachel did well in therapy. In speech she worked on swallowing and vocalizing and it was the first time she got to "talk back" to her physical therapist when she was having Rachel roll. It's been fun for everyone to hear her voice. On Thursday Rachel and Emily got off to school just fine. A van comes to the house to pick her up. Rachel had fun on the first day of school with her speaking valve. She sat in front of Emily during circle time and chimed in a few times. She got to play on a therapy ball and make a crayon rubbing of a spider web, we're getting quite an art collection on Rachel's wall and ceiling. Oct 10th 2006: Tuesday Today we finally got a new van. Now it will be much easier to go to Dr. appts in Duluth or the Cities. Our new home care case manager stopped by today but because we were so busy with car stuff I only got to say "Hi" for now. Only one more day of maternity leave left, I go back to work on Thursday. Oct 9th 2006: Monday Rachel's PT was sick so we just had speech therapy. It was the first time we had the speaking valve at speech therapy so it was really fun. We got good tips for how to get her to vocalize. Later that day I gave her a vest treatment so the valve was off and she still figured out how to get air past her vocal chords! She's so smart! She also doesn't make as many Chewbacca noises because in just one day she figured out how to manage her vocal chords so they wouldn't make noise all the time. We're totally amazed at how fun it is that it feels like we can interact with her more now that she has all these sounds. But I feel bad when I have to take the valve off because I feel like I'm taking away her voice. So I'm pretty annoyed that no one else knew about this sooner, but I suppose most don't have much experience with trachs because really serious cases do most of their care in the Cities. So if you ever know someone who's getting a trach, ask if they're able to get a Passy-Muir valve. Only Latest 20 updates shown. To view all of them click SHOW ALL MAKE A DONATION VIA PAYPAL AMOUNT: Donations can also be made at Wells Fargo Banks to the Rachel Nyberg Benefit Fund. Thank you for your support! Copyright(c) 2005 No Use of images for any purpose without direct approval by parents Special thanks to Amanda Odeski for title photos of Rachel!