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Thursday, October 22, 2009 11:57 AM CDT
So what’s new with Ryland well a lot. After missing the first week of school with Bronchitis and Pneumonia I thought we would be safe for a couple month but that wasn’t the case. Influenza A and H1N1 came to our area and Ryland got it, along with Nathan, Mitchell and Daddy. Ryland spend 4 days in the hospital but I think we got him in soon enough that it didn’t get to bad and his sodium to get to out of control. It was a long two weeks with everyone sick but we did ok. My mom was here to take care of Nathan and Mitchell when Ryland was in the hospital and a couple days after so she helped the first night after getting out of the hospital, she slept with him in bed, so he slept much better. Ryland had to have neb treatment every 4 hours so that was a little hard to get use to.
Other than that he’s back to his happy self, even eating like a pig last night at supper, he didn’t have Chili like us but lots of squash, still can’t believe he ate that much. He’s also slept for a couple night all through the night but he is back at school and I think that tires him out, he doesn’t take naps so he usually ready for bed at 10.
Now with the colder weather Nathan and Mitchell are almost done with football just one week left. Don’t think we are doing any winter sports since Mitchell needs to get his grades up and school comes first. Once it starts snowing Nathan will probably do some snowboarding. It’s hard to believe that winter is here, since it’s already snowed I can say that. I just wish we had more 50-60 degree weather, Ryland didn’t get out much since being sick and the weather being cooler than normal.
In less than a month Ryland will be 6, hard to believe, where did the last 6 years go? I still remember being pregnant with Ryland and going to Mitchell’s kindergarten class for parties and helping out now I’m doing that for Ryland and I’m pregnant again.
Just keep Ryland in our prayers that he stays healthy and he can enjoy this winter.
Summer
If you would like to send Ryland a card you can do so at
Ryland Jesse
PO Box 212
Hartford, SD 57033
Monday, September 7, 2009 1:10 AM CDT
I know it’s been forever since I updated Rylands site. There’s one little reason why, Ryland is going to be a Big Brother, baby is due Feb 12. I guess another reason is face book which I do lots of updates on and I really haven’t been on the computer much these last couple months.
Summer seemed to go by pretty fast. After baseball was over with it’s was like we had to start to get ready for school and Nathan and Mitchell had football. The weather was warm so we didn’t spend to much time outside and right when the weather cooled down Ryland got sick with bronchitis and pneumonia which lasted 3 weeks. Right before he got sick we did make it so Wild Water West and went swimming, I think that’s where he picked up something and he got sick. He was doing a little better last week so we went to the races, which made him VERY HAPPY, of course.
I guess to make this update short I’ll just go over a list of stuff we have done. Went to many baseball games including Sioux Falls Canaries games, powerwheel chair camp,two local races, couple of the boys football games, 4 doctor appts, swimming and therapy every week, couple birthdays, Make A Wish party, set up Rylands medical bed and rearranged the bedroom and got the kids ready to start school. I know there’s a lot more but it would take pages to write everything down.
Some newer news is Ryland missed the first week of school from being sick and this last week I went with him to school to teach the aids and teachers how to do different things with him. I glad I was further along in my pregnancy because I was very sick the first 12 weeks, still I’m alittle but better than it was before.
My brother, sister in law and niece moved back up there from NC, so we’ve been able to spend time with them.
We have had a busy summer and a busy start to the school already. Nathan and Mitchell have football games every week and Ryland has swimming on Thurs. (which may change) also PT and ST on Tues. Ryland goes to school all day Mon-Fri, which is going really good, as long as he sleeps good the night before. Nathan is in 9th grade and Mitchell is in 6th grade. Nathan will be able to drive in Oct. by himself during day hours and Mitchell’s 12 B-Day in Sept 9th. We all have busy schedules till Dec.
I’ll try to update more now that Ryland will be in school and I’ll be at home left to clean and find things to do, I’m going to have a hard time with having 6 hours a day to myself which has not happen in 5 ½ years. As long as Ryland stays healthy all winter it will make life easier for us, when he sick it’s many sleepless nights and just praying for him to get better.
Summer
more pictures at Rylands other site www.caringbridge.org/visit/rylandjesse
Sunday, June 28, 2009 8:32 AM CDT
I know it’s been almost a month but we’ve had a very busy month with baseball games almost everyday and still having all of Rylands appts on top of that. Ryland had his last game on Saturday, hard to see it over with since he loved playing baseball. Nathan and Mitchell still have baseball for a couple weeks. It’s been a little rough since it’s been so warm out and Ryland can’t handle the heat. I don’t mind sitting out it 90 degree weather but Rylands body can’t handle it. Below is what I typed to the HPE yahoo group, I didn’t want to have to try to retype it again but we got a letter that says Ryland doesn’t qualify for the Disabled Children’s program.
**Since Ryland was a year old we've always qualified for the Disabled Children's Program here in South Dakota, it's his back up medical Ins. Medicaid So on Sat. I got a letter saying he qualifies for the disabled part but not the health part, yes you hear me right. So now we are going to have to fight to get that turned around because there is no way we can afford what our Ins. doesn't pay. The months he doesn't have lots of extra doctor visits or hospital stays it's still around $800 that Medicaid pays, if he were to get sick and we have to go to the doctor and if he ends up in the hospital it's going to be in the $1000.
It's bad enough right now we are going through bankruptcy because we can't pay off medical bills that we have right now.
No he hasn't been in the hospital over the last year but I've fought hard to keep him out. I've had many nights were I was lucky to get any sleep just so he won't have to go into the hospital. I didn't go to school to be a nurse and I don't have a degree but when it comes to taking care of Ryland I know way more then any nurse would know that's in the Hospital.
I just don't know what to do. I already have so much going on and now I'm going to have to call all or Rylands doctors and see what they can do to help me out. Of course I had to get the letter on Sat. so there's nothing I can do till Mon.
Just this past Mon we almost had to take Ryland into the ER at 2am because he was throwing up because to the heat but I stayed up till 3am with he to make sure he stopped getting sick and made sure the fluids going through the tube were just the right amount that wouldn't throw up. Yes I could have taken him in and we might not have been admitted to the hospital just stayed in the ER but Ryland also seem to do worse when he is in the hospital, even going for a visit he gets worked up.**
So after spending hours filling out the form to keep him on he now doesn’t qualify. We’ve had a pretty good month with everything going on and June has gone by fast and now this to deal with over the next couple weeks. If anyone has any helpful information let me know, I’m gonna need it.
~Summer
The picture is Ryland at the races in Hartford, he loves racing, uncle Danny is trying to hold him
Friday, May 29, 2009 1:20 PM CDT
Time sure seems to be going fast. I updated 10 days ago but it seems like yesterday. Things are going good. Ryland has had a couple Baseball games and he really enjoys them, the first time we took his walker to the game and the 2nd time we took his wheelchair. I don’t know what he liked better. He now done with PT for awhile since he’s doing Power Wheel Chair camp. We are hoping to maybe get ST twice a week to get him communicating more. He tries so hard at ST but does get frustrated. Swimming starts back up in June and we will be going on Mon at 1:00, which works out pretty good with our baseball schedule.
Nathan and Mitchell have had a couple games also. Since Nick now gets off at 6 he can watch Ryland so I don’t have to drag him out in the cold or Hot weather, there’s really been no in between. Last weekend Nathan had a baseball tournament in Brandon so we were there Fri, Sat and Sun. I had to babysit but it went pretty good and Jada (little girl I babysit) and Ryland were good kids. Nathan has another BB tournament in Tea this weekend, we also have stuff with CMN going on and we are also going to a Canaries baseball game. Not sure how it will all work out yet, I have Sat figured out just not Sun yet.
This coming week isn’t any better, the boys have game Mon-Fri and then Nathan and Mitchell have tournament over the weekend one in Brookings and the other in Montrose. I also have to babysit, I know I don’t have to but the money helps pay for gas and getting into the tournaments. I could really use a full-time job to pay for all the baseball stuff.
It is nice that school is done with. I like having Ryland to myself all day. Nathan and Mitchell are pretty much gone during the day running around with friends. I’m hoping to get Rylands little pool set up and to see if it will work for him just to sit and lounge in, it’s only like a foot deep.
Well, I’ll try to get pictures up. I don’t know if it still works but you could check out Kelo-land, Ryland was on the news the other night, they were talking about the Miracle League. He’s in his walk about half way through the video, my nephew was helping him bat. Here’s the link http://www.keloland.com/NewsDetail6162.cfm?Id=25,85045
~Summer
Tuesday, May 19, 2009 2:48 PM CDT
I know I haven’t undated in a while. Things are going pretty good. The kids are all in baseball and Nathan and Mitchell have had games. Rylands first game is on Thurs. I’m getting excited for that to see how he likes it. The kids are all done with school this week, so back to Nathan and Mitchell driving me nuts. With this nice weather we’ve been able to get Ryland out in his walker and BOY does he know how to go. He just loves walking in the thing now. We’re thinking about using the walker instead to his wheel chair for the games.
I had a good mother's day. Went to Sioux Rec. and went on a little hike, with Ryland on my back, yes I said on my back in a carrier. It was a workout but I hate to leave Ryland out of stuff, I know when he 50 lbs carry him won't be a option anymore but I'll do it till I can't. I got to be with all 3 for most of the day but my mom took Nathan and Mitchell fishing for awhile.
This past weekend we went to Rock Rapids for my cousins sons (Max) birthday. I wouldn't even be mentioning this but Max is going to start racing Go Karts and we decided to put Ryland in it and start it up, I don't think I've even seen him Smile So Big. He LOVED it and yes he got mad when we took him out.
Well I can’t thing of anything else right now, except for I’ll be VERY busy for the next month and a half.
~Summer
Here's some pictures from the last couple weeks
Sunday, May 3, 2009 1:31 PM CDT
Ryland is doing pretty good. Nothing much has been going on. He has swimming last week and of course was wild. He did good at PT on tues. They have been using a trampoline for working with sitting and he loves it.
Friday he has PT and ST and this week was more exciting. He has PT first and just as we got him adjusted in the power chair and going out of the gym door the fire alarm went off. He was laughing at the loud noise. We all went outside and the fire trucks arrived a couple mins later. Ryland was still in his chair so he was able to get some outside time with it. After all the fire men went inside Ryland drove the PowerChair over to check out the truck and by him self went all the way around. The firemen came out and started talking to Ryland and gave him some stickers, he loves when people talk to him. I didn't have my camera but wish I would have because he was just smiling away. They said we could come down anytime to check stuff out. There was no fire so we went back in and Ryland stayed driving the chair. There is one thing that is pretty funny, they have a water fountain and Ryland loves to go and check out and he did. They would push him away and he would drive right back to it. I will have to bring my camera and tape that sometime.
ST he did pretty good. He's getting a better idea of the head switch but the one he has to push with him hand is a little harder since he still doesn't have much control but he does work very hard. I'm hoping at the end of May Ryland can try out the Dynavox Eyemax it's a system that you only have to use your eye to choose. There's a little girl that comes to CCHS for thearpy and Ryland might beable to try it out. Something like this would be great to have but with them costing somewhere around $14,000 it's something we just can go out and buy. If Ryland gets better with other communicate devices and shows he can choose we should beable to get Ins. to approve it but that's still aways away.
Now with school almost being done with and baseball starting up I'm trying to think how am I going to beable to handle 3 kids in baseball. All during the week mostly Mon-Thur. We are cutting PT out during the summer since Ryland will be going to a Power Wheel Chair camp. He's not doing summer school, it's just to much of a hassle and I want Ryland to get some rest before starting kindergarden, he will be going all day everyday next year.
Kate Rylands PT thinks we are doing a good job at home and just to keep with what we are already doing. We will pick it back up again to get more Power Chair time in. Ryland will keep doing ST throught the summer and we might add another day in just to keep up with the learning to making choices. 30 mins doesn't leave alot of time to get much done but 60 mins at one time would be to much.
That's about it. I'm going to go get ready and me and Ryland are going to go for a bike ride, as long as the tires aren't flat, haven't checked yet. If they are then we will just go for a walk/run.
Summer
Tuesday, April 21, 2009 6:02 PM CDT
Ryland is finally feeling better and is not as crabby and fussy as he was over the weekend. He didn’t sleep to good last night but he wasn’t coughing. He did good at PT today and did good during the car ride so he’s almost back to himself again.
Nathan turned 14 on Monday and Sunday night we went out for supper and Ryland was very fussy. He did keep quiet while we were feeding him ribs. I got some cute pictures, he really loves ribs.
Last week I did bring him to the doctor and his white count was a little off but his sodium was fine so he didn’t have to be put into the hospital. He lungs were a little cloudy, so he was put on a couple different meds.
We have a busy couple weeks with different appt and therapies. I can’t wait for this nicer weather and Ryland can finally get outside.
That about all for now. Oh, one more thing, Ryland is going to be playing in the Miracle League baseball this year and we are selling raffle tickets for $5 to help out with the cost, so if you would like to buy a ticket you can email me at rylandsmom350@yahoo.com or send money to PO Box 212, Hartford, SD 57033
Summer
Wednesday, April 15, 2009 1:29 AM CDT
Ryland is finally sleeping so I thought I better update. He's not been feeling to good since sunday and hasn't been sleeping good for two nights. I know I should be sleeping since he is but I have so much to do, like washing the PJ's Ryland threwup on.
Well, that didnt' last long he's awake coughing again, poor guy. I wish he could get some sleep. I was hoping for him to get better so we don't have to go to the doctor, I'm trying to stay away from the hospital but with him not eating and throwing up if you give him to much it's doesn't look good. I'm so tired my head hurts. It's been non stop nebulizer and suction all day.
I should go get the neb ready, Iwas hoping that sitting with him by the computer would calm him down, that sometimes works but he's just getting mad.
Summer
Ryland new website www.caringbridge.org/visit/rylandjesse
Thursday, April 2, 2009 8:37 AM CDT
Sorry for not updating sooner. Our computer was having some problems so we weren�t on it to much. Ryland now is doing better, still has a little cough but much better than we were a week ago. He ended up getting a really bad cold part of last week along with Nathan and Mitchell. We did get lucky and had no hospital stays not even a doctor appt. I kept it under control with neb treatments and the suction machine. Friday he was better but didn�t go to PT and ST, didn�t want to over work him. He missed swimming also.
Last weekend we went to the CMN Dance Marathon in Vermillion at USD. We only stayed one night (Fri) but that was enough because Ryland didn�t sleep good and was up off and on all night. We did get some swimming in which Ryland was happy about. It was just me, Ryland and Nathan, Nick was working (which he usually is) and Mitchell was with his dad. We did leave early because Ryland was a little fussy and I was tired.
On March 21st we went to my nieces 2nd birthday party in Brandon at the Pizza Ranch. We had fun and got to see some family also. There�s a little game place next to Pizza Ranch and we played games after eating and having cake and Ryland had a blast. He loves playing games and he even got to ride on some with help. Oh, before the party we had to niece for a couple hours so we got some pictures taken for her 2nd birthday and also pictures of the kids together. It was fun to beable to spend some time with her, she is a really good 2 year old and is very goofy, just like her daddy (my brother).
The last couple weeks have went by so fast, here�s just a couple things gone on. We got to see my niece Makayla 3 times, two of which she was at our house. Ryland had fun having someone to play with. I got my cap for my tooth that had a rootcanal done on and it�s nice to chew on the other side of my mouth. Ryland has been in a walking mood and now walks across the living room, on the carpet, which is not easy when you think that he has to push the walker with also. At PT this week he didn�t do to good with the Power Chair, a little cranking but he usual PT wasn�t there but I don�t know if that�s why. Mitchell has a band thing the other day, one of the solo or group things, Mitchell was in a group and played the triangle. Ryland liked the music but did get a little noisy. Ryland has also been using the pottychair more, hopefully soon we can get a speical needs one and that will make it alot easier.
Well, I don�t know what else to say. I wish for some nice weather and for Ryland to stay healthy. One more thing, 5 years ago at this time we didn�t know about Ryland HPE yet. It�s hard to think about how much our lives changed from April 2nd to April 16th in 2004, we went from thinking we had a healthy 4month old to being told Ryland would never leave a normal life. I like to think he�s leading a normal life but just in a different way, he can walk, with help, he can color, just not the best, he can talk but we just don�t know what he�s saying and if he wants something he makes a fuss till he gets it.
Summer
NOTE: I will be switching to the newer Caringbridge site but will still update here as long as I can. Caringbridge has made lots of new updates. Also adding new journals will be easier on the other site, here it is www.caringbridge.org/visit/rylandjesse
I like the old ones cause I can use HTML codes and put more stuff up.
Thursday, March 19, 2009 1:10 AM CDT
Ryland is doing good, he got over whatever he had with no problems. He’s a happy cheerful Ryland again. We again have had a busy couple weeks. In therapy he’s doing the same things, still working with the Power Wheel Chair. I think if he was able to practice everyday he would have it down by now but only getting in it once sometimes twice a week is a slow process. He is done with OT for awhile and we are going to start Speech Therapy and work more with communication devices. There is a new thing out called a Dynavox Eyemax that you just use your eyes and look at the screen to say what you want but it’s spendy, around $10,000. I’m hoping with more ST he can use some more simple communication devices and later down the road look into getting something for him. It would be great to beable to communicate with him more, he already tries so hard when he’s trying to tell us what he wants.
Swimming is the same, he loves going. Last week and this week Ryland went potty in the potty chair. He gets so happy when he’s knows he’s done something big. We do have to bribe him with whip cream. Also last week we put him in his walker and he was trying so hard to walk around the house so this week I brought in outside and he did great. We walked a couple houses down and back a couple times. The walker he has is kind of bulky so it takes a lot to get it going but he did.
Since we’ve had nice weather Nathan and Mitchell have been out a lot more. It’s nice they can get out of the house now but I know it might not stay that way with our South Dakota weather. No sports right now and not much going on with them. Mitchell is doing better with his stomach since starting medication, now I only wish it wasn’t so spendy. They both also need to get back to the dentist one more time for fillings and sealants but that will have to wait since my dentist bill this month was $400. Funny how a rootcanel to save one tooth can cost so much, the $400 is only part of the bill for that. Now for Nick, he’s been working nothing new with him.
My niece and sister in law are here from NC but we will only being seeing her a couple times so I’m not making a big deal out of it, my sister in laws family is much more important, so seeing my niece is almost impossible. Her birthday is this week and I will get to see her on Saturday at the Party. I wish we could spend more time with her since Ryland really loves playing with her but I’ve tried.
Well, that’s about it for now. HoPE the weather stays nice so Ryland can get out more, I’m thinking we will get the walker out again on Thursday and maybe walk down the block this time.
~Summer
Thursday, March 5, 2009 3:10 AM CST
I guess to start off I could tell you about our weekend up in Brookings at the CMN Dance-a-thon. We spent Friday night at the motel and went swimming, of course. On Sat. we went to the event. Ryland was having a bad morning and was crying with every little noise but by lunch he was better. We went back to the motel in the middle of the day to get some rest and maybe swim but the pool was closed so we just chilled and headed back to the Dance a thon for supper. We didn’t stay till it ended since we wanted to go swimming so back to the motel to get some late night swimming in. Ryland was happy to be in the water even if it was 10:30 at night, since the pool closed at 11pm we headed back to the room to get some sleep. Sunday morning after breakfast we headed back to the pool and got some swimming in before we had to check out. We had a really good weekend, it’s nice to get out every once in awhile. Ryland did pretty well for sleeping in a different place, I was surprised and so were Nathan and Mitchell. Nick had to work so he did come with us.
On Sunday when we got back Ryland of course watched Nascar, can’t forget that. He went to bed pretty easily but it didn’t stay that way very long. Sometime after 2am he bit his hand, I didn’t know he bite his hand but I woke up to screaming and crying and had no clue what was wrong till after 20 or so mins of trying to calm him down. So our night didn’t go to well and he didn’t want to go back to sleep but he did after a couple hours, I don’t really remember the time at all, I don’t think I had every jumped out of bed so fast.
So now on to Monday night. I was afraid Ryland might bite his hand again so I just had him sleep with me. It’s sometimes easier since I wake up many times during the night to check on him. I woke up sometime around 4:30am to Ryland grinding his teeth and shaking like he was cold so I covered him up. After about 30 or so mins of this he still had cold finger and toes and than I felt his back and he was burning up. I got up check he’s temp and it was 102.9, which is very high for him since he usally runs in the 96’s. So off came the PJ’s and in went some meds. I got a cool rag, which he didn’t like but it help cool him down. After about a hour his temp was down alittle. I think by 6am he was watching cartoons and seemed better but by 8am he’s fever was going back up so more meds. Nick had to go late into work since I had a dentist appt. and Ryland slept while I was gone, with Daddy. I got a picture it was so cute.
Tuesday Ryland seemed better but by Wed. morning he was running a fever again. So I called the doctor to make a appt. Ryland still wasn’t himself much of Wed. still kind of loopy and tired. The doctor said everything sounded and looked good. Blood work was okay nothing to get worried over. So it was just some stupid virus. He still running fever but the tylenol and ibuprofen seemed to keep it down.
So now onto Thursday and the weekend.
Summer
Monday, February 23, 2009 2:34 PM CST
Boy, time has gone by fast these last couple weeks, it feels like I just updated. We’ve have a busy couple weeks again of course with swimming, OT, PT, Mitchell Basketball, Nathan snowboarding and lots of other things. Last week me and Ryland went up to Pierre (State Capital) to support the Birth to Three program, I won’t go into detail but it was in danger of being cut. So we left Sioux Falls on a bus at about 5:30am, after about a 4 hour drive we got there and the rest of the day was spent in the Capital building going to meetings but we did get a tour in, we finally headed or home at about 6pm and me and Ryland were finally home at 10:30. It was a long day but Ryland did very well for a 5 year boy around lots of people.
Now we are just waiting for some nicer weather, I think everyone is getting cabin fever. Nathan and Mitchell really need to get out, they are driving me nuts but of course Ryland thinks it’s funny when they fight and run around the house. Are plans have changed a little for the spring/summer, the kids are still going to do baseball but our plans of going to NC have changed, me and the kids planned to go in March but it’s looking like it will have to wait till we get our medical bills figured out, right now Nick’s wages are getting garnished at about $220 each pay check, so some stuff is being put on hold.
We are just praying that Ryland stays healthy and makes it through Feb. without a hospital stay, that would make it a year without one. He’s been very healthy compared to the last 4 winter. It’s nice not having to worry as much. Oh, also we got the genetic results back and Ryland has the Zic2 gene mutation and me and Nick aren’t carriers of it. From what I understand it’s something that starts with him, so no one else in the family should have to worry. Every healthy couple has a 3-5% chance of having a child with HPE and me and Nick’s chances just go up another 1-3%. I got the Laboratory report but I don’t even understand it. Ryland was just meant to be.
That’s all for now. I’ll try to get pictures up but I haven’t been on the computer much, just to busy. I have lots of good ones and video’s also.
Summer
Wednesday, February 11, 2009 0:55 AM CST
Another good but busy week for us. Ryland did good on Friday at PT and OT, he was a little tired. On Sat. we did the CCHS Mall Walk and it was nice to have Ryland healthy and happy. We made it 2 ½ times around the Mall. We didn’t do much the rest of the weekend. Monday it was back to school and Ryland had his conference, which went good.
His teacher and I talked about how much he’s improved over the last couple years of preschool, when he started he often cried and missed many days because lack of sleep and just being to fussy. Up until Ryland was about 3 ½ we didn’t take he to many places because he was very picky about where he was at. It’s hard to believe when I look back at those days when he would cry during car rides and me and Nick just didn’t know what to do, I didn’t think it would ever end or the 1 ½ years of him throwing up sometimes 5 times a day. Let’s not forget about the very sleepless nights, I was lucky to get 4 hours, now I’m lucky to get 6 hours or more but I still get up to move him in his bed or to put him in bed with me, but it’s much better than it was over a year ago. I’m just amazed at what Ryland has done and overcome. It’s nice not to have a hospital stay every couple months or running to the doctor for all his illnesses. I know this can change at any moment but for now we are enjoying life, oh and the nice weather these past couple days, which doesn’t look like it’s sticking around.
Now for Tuesday, Ryland had PT and got to use the power chair and he did good. It was one of those days I almost cried, I could feel the tears coming. Just watching him listen to his PT and following her directions. He still thinks he can go into every room even if we shut the doors.
Today (Wed) Ryland has his Valentines Party at school and I’m helping out. I signed to help with Mitchell’s Party but I can’t be at two places at once so Mitchell will have to haul the drinks to school. I like going to Ryland’s that way he can do what everyone else is doing. Funny to think that this will be Mitchell’s last year for parties since he will be in 6th grade next year and there’s no parties. So anyways after school we will head to Sioux Falls for Ryland’s swimming. Then a short break from school, the kids have Thur-Mon off. Nathan wants to get in some snowboarding in, I think Mitchell has a basketball game and it’s my weekend to baby sit, so we’ll see how that all fits in.
~Summer
Wednesday, February 4, 2009 3:59 PM CST
Rylands doing pretty good. This week he starts PT twice a week and we are still hoping to add ST sometime. It's hard to believe how good he's been doing. He still has problems with his sleep but I think he will have that problem. Right now he doesn't even have a runny nose even with the below zero temps. I'm hoping this keeps going like this and we can make in through Feb. with no hospital stays, for those of you who don't know, Ryland likes the month of Feb. for hospital stays.
This weekend we have the CCHS MallWalk and the last two years Ryland hasn't felt good so it will be nice to have a happy heathly kid to walk around with. I'm hoping to get his walker out but with his new wheel chair I can't fit both in the back of the jeep.
Other than that everyone is doing good. Nick has a new work schedule so he does get to see Ryland more now. He's usally home at 6:30-7:00 and Ryland knows it. If Nick walks in the door and doesn't go right to Ryland, Ryland starts to fuss, it is funny to watch.
Ryland has swimming tonight but wanted to undate before leaving.
~Summer
*The picture is of Ryland watching the Super Bowl, he's got chocolate in his teeth from a cupcake
Thursday, January 29, 2009 3:20 PM CST
I thought I better update, the last couple weeks went by pretty fast but we were busy with things almost everyday. Ryland was doing pretty good and got sick on Tuesday and wasn’t feeling good for about 24 hours but neither was I. I was running a fever and could not eat anything so I’m think me and Ryland had the same bug. We just gave Ryland watered down powerade and kept just enough fluids in him to keep him going. He fine now he just missed school and swimming on Wed.
This week also Ryland, Nathan and Mitchell all went to the dentist and Ryland did really good and he teeth aren’t to bad beside him grinding them all the time. Nathan and Mitchell didn’t fare so good they both need to go back in a get filling put in and some other stuff done. Last week I had a rootcanel and need to go back in to get in capped. I’m hoping I never need another one, I just have to remember to stop putting myself last all the time and get in to see the dentist when something starts to hurt and not wait a 1 ½ years. After all the dental stuff is done in the next couple months we will have spent out of pocket well over $1,500, thank goodness we’ll be getting our taxes back.
As far as PT and OT at CCHS are going Ryland is doing pretty good. They were talking last week about Ryland going to summer school at CCHS, they think it will be much better for him since he’ll get to work more with the Power Chair. I guess they have a Power Wheel Chair camp during the summer there. He would also beable to do some more swimming and maybe start ST also. He’s also going to start going to PT twice a week so he can get more PT time in, So now we will be going in to Sioux Falls on Tues, Wed and Fridays for Ryland stuff. I didn’t some calculations and it would be around $1,000 a year for gas, just for therapies and swimming in a year.
Well, I better end this update and go get Ryland from school. One more thing, we are doing the Children’s Care Hospital and Schools MallWalk this year and are taking donations, we are trying to get to $250 raised but are still far from it. If you would like to donate just email me.
~Summer
Monday, January 12, 2009 1:14 PM CST
Ryland had a ruff week. He was sick off and on and only made it to school one day. He didn’t sleep very good because of a stuffy nose, so every couple hours at night I would go and suctions his nose. He can’t breath through his mouth very well, so if his nose is stuffy he really can’t breath. Thursday he threw up, I think from all the mucus and stuff. We stopped with his formula and did just Poweraid and he didn’t throw up again, so we did go to therapy on Friday but he was crabby because we had to wake up early since I had a doctor appt early on Friday. If he has to get up before 9am he’s not a happy camper. The only time he was really happy during therapy is when he was swinging, which he loves. I need to find a way to put a swing in our house. Ryland went to school on Wed and was doing pretty good so he did get to go swimming, which he had a blast doing. Now on to the rest of the week.
Saturday was our busy day. Mitchell had Basketball, Ryland had a Birthday Party to go to, Nathan went snowboarding and I had to babysit. So my mom came to help me out so I could get it all done. She babysat while I went to Mitchell’s game, took Ryland to the Party and I dropped Nathan off with my brother Danny and he took Nathan to and from snowboarding. I didn’t make it back to help with the babysitting. My mom asked me how I do it with all the kids there, she said she couldn‘t even go into the bathroom without something going wrong. On Sunday we had nothing going on so we just played all day.
Monday again and it’s snowing and doing all kinds of stuff, so Ryland doesn’t have school and Nathan and Mitchell got out early. Luckily our Netflix movies should be at the post office. Hopefully Rylands stuffy nose will clear up soon, so he can get a good night sleep again, instead of being up every hour.
~Summer
Monday, January 5, 2009 10:26 PM CST
I thought I better update. We had a good Christmas break. Christmas sure went by fast and no I still don’t have any Christmas stuff down. Ryland got lots of PJ’s, and some pretty cool toys. We still need to get many of them adapted so he can switch them on. There’s run down of what we did.
Christmas Eve and Christmas day we went to Nick parents house. We were going to go to a movie on Christmas day but had my mom and brother over later on. We did go the next day to a movie and Ryland did really good. I babysat over the weekend after Christmas, so we just lounged around. I also babysat New Years Eve and New Years Day so we didn’t do much on those days. On Friday Ryland had PT and OT and then I took Nathan and Mitchell out to Great Bear to Snowboard (Nathan) and Ski (Mitchell). Nathan had bought a used Snowboard off Ebay and since it took two weeks to ship it we had to wait to go snowboarding. Me and Ryland watched them for awhile and then headed out to go shopping and also went to a movie. It was a fun day. Now for this past weekend, Sat. we went to my aunts for Christmas, it was a little icy but we made it to IA, just a little late. Sunday we ran back into Sioux Falls to do a couple things. I really don’t know were the week went.
So now we are back to the normal school, basketball, swimming, and therapies. With a couple appointments thrown in. I will be a little busy with getting everything worked out with our new Ins. Nick had to switch Insurance at work so now I’ll have to get all this worked out with Rylands stuff. Making sure things are getting covered and getting stuff pre-approved.
Ryland did miss school today because he was running a fever all night and didn’t really sleep much. I think he finally fell asleep at 5am. He seems fine now so who knows what it was.
I could go on and on but need to get Ryland feed and to bed.
~Summer
Tuesday, December 23, 2008 10:30 PM CST
Ryland got his new WheelChair on Friday. He looks so big in it. He really likes it and it's a much better fit for him. It's nice to finally have his new chair but it is quite heavy and is not easy to get into the Jeep. I also have to take the extra handle bar off and the head rest to get it in. Before when I picked up his Kid Kart I didn't have to have the kid kart touch me but his new chair I have to use my whole body to get it in the back. With this, I don't think I will be taking Ryland with me as much like going shopping and stuff because I don't think my back can take lifting the chair in and out of the Jeep a dozen times. I guess that's why they have minivans with lifts but that something that will have to wait for us.
Ryland has a break from school and from swimming for two weeks. He will still have PT and OT on Friday. I'm hoping to get out alittle during the break. Nathan is getting used snowboard stuff for christmas, so we will go and watch him. If your wondering why used, well new stuff would have cost around $400 plus. Mitchell may get to try out snowboarding we'll just rent the stuff for him at Great Bear. I'm hoping for some warming weather so I can at least get Ryland out and do some sleding, he loves it.
That's about it. Have a Very Merry Christmas and a Happy New Year.
~Summer
Sunday, December 14, 2008 11:20 PM CST
We are all doing good, besides the FREEZY cold weather. For those of you not from SD it was with windchill down to -30.
This week seemed to go by pretty fast. Ryland had swimming and did good, he still loves to swim. PT and OT went great also, Ryland got to work with the Power Wheel Chair again and is getting better at it. He really enjoys moving. Nick got off work early on Friday so we went and got some Christmas shopping done and also went out to eat and Ryland was the BEST 5 year old any parent could ask for. If was nice to have Nick with to do the shopping because getting Ryland and a WheelChair in and out of our Jeep a million times can be a Pain, so it was nice to have a extra hand.
Let's see what else, really not much else happen this week, not extra appts. or special outings. Oh, Mitchell did have 2 basketball games but since I was babysitting I just picked him up. Nathan babysat the 3 year old boy and I took Ryland and the 1 year little girl with me to Brandon. She fell asleep in the car so it was a pretty smooth 30 min drive there.
The kids are getting ready for a break from school. It will be nice not having to get Ryland all buddled up everyday to get him to school. I swear with winter clothing, gloves, hat and coat it adds about 10 extra pounds of lifting.
With Christmas fast approaching please keep these families in your prayers as this Holiday season will be there first Christmas without there special HPE Angels. Sammy, Cayden, James, Hunter, Zuleika, Andrew, Zoey, Madelyn, Conner, Isaiah, Emmaleigh, Ava, Amish, Ryan, Luis. Also keep Taylor's family in your prayers, she passed away in April and her brother Kai, who has HPE, is one of Rylands buddies.
~Summer
Friday, December 5, 2008 8:43 PM CST
Ryland is doing good and seemed to get over whatever he had really fast. This week was a normal week with therapies and swimming. He also had to get his Port-a-cath flushed but did good and only got mad when we held him down to do it. In PT today he got to work with the Power Chair and did really good, the little stinker kept wanting to go into all the rooms at CCHS, it was pretty funny. Kate, Ryland PT said he was being to nosey. LOL The biggest problem is getting him to stop, he just wants to go, go, go. I also got a call this week that his new wheel chair is in and we are hoping to get in Dec. 22nd. Let’s see what else, oh, his new med seems to be working a little, he is getting a little better hand control and he is biting less, which is good. Over the last couple weeks we have been able to get him off Reglan and now has been off of it for 4 days with no problems and he is still eating just as much. The new medication Ryland is on interferes with Reglan so we were hoping that he could get off Reglan and we did, so now we can up the dose of the new med to see if he gets even better hand/arm control.
For the rest of us I’m busy sewing, Nick’s busy working, Mitchell has Basketball and Nathan helps watch Ryland so I can get stuff done.
~Summer
Monday, December 1, 2008 12:55 AM CST
Ryland woke up with a fever on Sunday but seemed to be okay most of the day but he wasn't himself. He didn't want to take his bottle or really eat anything. Today he's alittle better but he will stay home from school, just to be on the safe side. I haven't had to give him any ibuprofen today so I'm hoping this doesn't turn into nothing big.
On Friday we went to the Parade of Lights in Sioux Falls and Ryland just loved it. His eyes were glued to the parade. I wasn't to cold but we did bundle him up so he won't get cold. After the parade we went to my brothers and watched the Get Smart movie. I have to tell you about this it was so funny. Well my brother his is stereo hooked up to the TV and the bass can get pretty loud. So Ryland was laying on the floor and every time there was a loud bass sound it would kind of vibrate the floor, plus it would be loud and he would just laugh and laugh. He would wait with anticipation for the next boom. He could care less about the movie. We were all laughing to.
Ryland has a pretty laid back week, just swimming, PT and OT. He does need to get his Port flushed but that's no big deal. We still need to do most of our Christmas shopping but I'm just not in the mood. If anyone needs a baby gift email me and I could make up some bibs and burp cloths, I also make Taggie blankets and special needs bibs.
Take time to visit one of Rylands friends website, James got his wings in August after 482 beautiful days on this earth. Read the Nov 24th post. www.sweetbabyjames.info/wordpress/
~Summer
Wednesday, November 26, 2008 9:42 PM CST
Ryland is doing great. He did good in swimming today and has pretty happy all day, actually as I am writing this he is in the living room laughing at who's knows what. Nathan and Mitchell are down stairs, I'm in the kitchen on the computer. I often wondering if some of his "angel" friends are keeping him company. I would record it but I know if he sees the camera he'll stop. It is pretty cute because it's his giggle laugh.
This week since it's Thanksgiving and CCHS isn't open he has a week off of PT and OT, which means I'll just do more at home with him. The Botox seems to be helping out alot, you can tell when you a stretching him and changing his diapers.
I don't want to jix it but I can't believe how good this fall/winter is going. I thought last year he was doing good but his year it's the best it's ever been. For those with special needs kids you know how nice it is to have a healthy happy kid.
Things are going to stay the same for therapy and swimming over the winter. One thing new is Ryland is getting a new wheelchair, it's a Quickie Iris. It will be yellow and black and have his name on the back.
Mitchell has basketball games starting in Dec. on Sat. early, so I don't know if Ryland will be to happy about that.lol He not a morning kid.
I don't know if I mention this or not but I've been babysitting every other weekend for a 1 1/2 and a 3 year old. Ryland loves having other kids around. It's amazing how well they do with him. The little girl is always trying to give Ryland toys, I think it's because she keeps getting his bottle. I might start watching them more but I'm not sure if I could handle 5 kids ages 13, 11, 5, 3 and 1. I know I could handle them but the hours would be later hours on Wed, Thurs and Fri. I have a hard enough time getting Ryland to bed. Right now I watch them 8:30 to 9:30 every other Sat. and Sun.
That's about it. Have a Great Thanksgiving.
~Summer
Wednesday, November 19, 2008 2:12 PM CST
Update: We went out to eat at Famous Daves and Ryland got some Ribs, he ate lots of different stuff. He got some more money so we went and bought Kung Fu Panda.
Happy Birthday Ryland!!!!!
Sunday, November 16, 2008 2:47 PM CST
Ryland had a wonderful Party last week. It's been a busy week and I just haven't had time to update. The video at the bottom is of Ryland trying to get his cake, oh we let him have at it.
His birthday is on Wed. and how thankful I am that I get to see him celebrate it, as many kids with Holoprosencephaly don't get this far. I have many people ask me how long does Ryland have and well, I just don't know. Many kids get sick and pass on but other lay down to sleep and get angel wings as they sleep. When I was little, my mom use to say our prayers with us and we also said the Lay me Down to Sleep Prayer. When I was little I never understood the line that said "If I die before I wake, I Pray the Lord my soul to take" It wasn't till Ryland was born that I really understood that line, I always thought how could the lord take a child as they slept. It's a hard question to answer but I could ask you the same question, "How long do you have? well, we don't know now do we. We just have to be Thankful for everyday that we have. It is hard because many HPE kids have passed on and many were Ryland's friends even though he's never met many of them I know he's got some pretty special angel watching over him.
Everyday I get to wake up and see his smiling face makes for another wonderful day. Every time he does something he's never done makes for a Wonderful day. Every month that passes without a Hospital stay makes for a wonderful day and every time I hear his doctor say he's doing good makes for a wonderful day.
Have a Wonderful Day
~Summer
Heaven's Very Special Child
A meeting was held quite far from Earth;
"It's time again for another birth,"
Said the angels to the Lord above,
"This special child will need much love."
His progress may seem very slow,
Accomplishments he may not show,
And he'll require extra care
From the folks he'll meet down there.
He may not run or laugh or play.
His thoughts may seem quite far away.
In many ways he won't adapt
And he'll be known as handicapped.
So let's be careful where he's sent;
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for You.
They will not realize right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for this gift from Heaven.
Their precious charge, so meek and mild
Is Heaven's very special child.
-Edna Massimilla
Monday, November 10, 2008 11:45 PM CST
Ryland had a great Birthday Party on Sunday.
Sunday, November 2, 2008 4:15 PM CST
We had a good week. Monday started off with my sister in law Misty and my niece Makayla flying in from NC. On Tues Misty and Makayla came over to carve pumpkins, we went to the park also since it was so nice out. It was pretty funny Ryland had lots of pumpkin stuff on his tray and he kept pushing it off and then Makayla would walk thought it, I think they were in it together. Wed was the Halloween Party at school and I helped out with crafts and games, I got a good video of Ryland playing the bean bag game and laughing, I’ll try to post that. Ryland of course had swimming, which Ryland had a blast. Thursday I spent running around to conference for all the kids and Ryland also had his IEP meeting so it made for a long day, it started at 2:30 and I was finally able to sit down at home at 7:00.
Friday was Halloween but Ryland still had PT, OT and got his new braces. After all his appts we met up with Misty and Makayla at my moms and did some treat or treating. It was so nice because almost every house was giving out candy, we walked two blocks down and 2 blocks back up and Ryland’s bag was half way filled. Almost every house was a Ranch style so he could go almost all the way up to the door. It took a little longer than planned but there was a good reason for it, Makayla had to stop at almost every house and play with the leaves, it was cute. She also wanted to ride on Ryland’s lap, so we would put her up on his lap and she would sit there till we got to the next house. Oh, another thing, Ryland almost fell asleep before we left to go treat or treating, I can’t get him to sleep but when something is going on he tries to fall asleep. Once we got going he woke up and loved getting candy. He loves chocolate and he got lots of it.
We ended the night with coming back to Hartford and going to G-pa Mike and G-pa Rose house and also stopping out at Brad and Laura’s (Rylands uncle and aunt) to see cousins Anthony and Camden.
It was a pretty good week, it’s always nice to have Ryland healthy, he’s a little stuffed up but it doesn’t seem to bother him. This weekend we are just taking it easy before our Big Birthday Bash next Sunday. It will be 10 days before his birthday but it will be nice to have Makayla there to celebrate it.
~Summer
Tuesday, October 28, 2008 11:55 AM CDT
Things are going pretty good. Ryland still has a stuffy nose and is coughing but it’s nothing big, just this cold dry weather. His been doing so good at everything, well except walking but he is getting Botox in a couple weeks so that should help with his tight hamstrings. We will having his Birthday Party on Nov 9th , I would have loved to invite more people but we are going to the Ramada and going swimming and your only allowed so many wristbands (13 with us having to buy 3 extra). Ryland loves swimming so that’s why we decided to do that. We should be able to get a full days of swimming in. If you would like to send Ryland anything for his birthday you can send it to Ryland Jesse, PO Box 212, Hartford, SD 57033. I’m looking into a adapted toy for his birthday that he plays with during PT and OT, but of course it is pretty spendy.
This last Sunday we went to the Dome and Ryland did really good. He only had like 6 hours of sleep but he still had a smile on his face. He did so good I bought him a balloon when we got home. We will have a couple of busy weeks ahead with Halloween, his Party and my sister in law and niece got here yesterday so we sill be spending so time with them. They are coming today and we are going to carve pumpkins, I love doing it but I always end up doing everyones.lol
Ryland will also be getting some new braces. We decided to do it now before our Insurance switches. Still working on the bed, I guess his stomach doc needs to write a letter for it. I’m worried that it’s not going to be done before we have to switch and then we would have to start all over.
Well I better go get Ryland ready for school. It’s a short week since they have conference this week. Can’t wait to see what all the teachers have to say. Nathan told me yesterday that he got 100% on a test and he was the only one, so hopefully his teacher would have to much to say but Mitchell on the other hand might be more interesting. As far as Ryland he tries harder than anyone I know.
~Summer
Sunday, October 19, 2008 0:50 AM CDT
We've had a pretty busy week and well the rest of the month is busy, I only have one day that doesnt' have anything written in it yet.
Ryland is doing good, a little stuffy nose but it's been cold, warm, the kind of weather that one day you have to have a coat, hat and mittens and the next day a t-shirt would be fine. He had all his reg. things, swimming, OT and PT. School is going good, we went to a pumkins patch for preschool, it was a 40 min drive but Ryland did pretty good. I wasnt' sure how he would do without his DVD player, since we had to take the car.(Jeep wasn't fixed yet) We had fun and got to do lots of things.
Mitchell had a playoff game but they lost so now we get to play in the Dakota Dome at 8am on a Sunday, all the Jr. Football teams in 5th and 6th grade get to play there. It will be fun but not looking forward to the drive. Nathan had is last two games, so now he's done.
I really dont' know were the time went. I was sad to see Aug end and now it's half way through Oct and Ryland birthday is a month away. I would love to have a BIG Birthday Bash for this 5th Birthday but it's looking like it's going to have to stay small. We will still have fun.
Ryland has a couple appts this week and I am hoping to know if our Ins. will get him a HARD medical bed. His crib is really getting small but it's safer than a reg bed. You would not believe how much he can get moved around in his bed. We need to get this figured out with Nick having to chance our Ins. in a month, so back to dealing with some new Ins. that's going to be a pain.
That's about it for now.
~Summer
Friday, October 10, 2008 9:41 PM CDT
I know some might be wondering how last weekend went. We had a Great time. On Friday there was Pizza and swimming. We had lots of Pizza and did lots of swimming. Ryland was having so much fun. Put him in water and he’s happy. I guess you could say we closed the pool (swam till the pool closed). I was really hoping that Ryland would do okay with being away from home but trying to get him to sleep on Friday was not easy.
Saturday was a busy day, it’s started off with a big breakfast and I guess you could say opening ceremonies for the weekend. The room were they had the breakfast was filled with balloons, if I had to guess about 300, tied to the back of the chairs. I wish I would have gotten a picture of Ryland when he saw all the balloons, it was like he eyes were about ready to pop out. After breakfast we went to Thunder Road (go karts, golf, rock climbing wall, stuff like that). My brother and mom also should up to help, my brother mainly to play with Mitchell and Nathan and my mom so she could watch Ryland while we all went on the go karts. Ryland could have sat there all day watching the Go Karts. There wasn’t much for Ryland to do but he did golf a little. I decided to do the rock climbing wall and yes I did make it up the Med hard wall. We went back to the room after Thunder Road and did a little swimming before heading to the Fair Grounds for the Bull Riding show and supper. We did stick around to long at the Fair Grounds because Ryland was getting alittle fussy but once we got back to the motel and he saw the pool he was HAPPY again, silly child. So we did some more swimming before bed. I knew it was going to be hard to get Ryland to bed and I was already tired from Friday night bedtime, so my mom stayed the night to help. I wish I could say I got a good night sleep but the Motels Fire Alarm went off at 4 am, yes the fire alarm. The only good part about it was is Ryland didn’t wake up, I acted fast enough to get a pillow over his ears and more him to the most quite part of the Motel room. They was no fire, I heard someone set it off.
The weekend ended with breakfast and more swimming. Mitchell had a Football game on Sunday as, the team won, so the weekend ended good.
Now for this week. Not much new to report. Ryland had school, swimming, PT and OT, all is about the same. I had a interesting week, I got bit by our neighbors dog, on the butt, so I had to go get a tetanus shot and be put on antibiotics. The only good about that was Ryland wasn’t with me, him getting bit wouldn’t have been much worse. Mitchell had another Football game on Thursday, they won so they keep on going with the playoffs. Nathan had a game but I didn’t make it to the game since it was out of town. I’ve been busy with making bibs, I’ve been getting more orders with all the Holidays coming up, you can search for them on Ebay by searching Rylands HoPE Boutique. You can also Email me if you need a Bib, Burp Cloth or maybe even a blanket.
Not much planned for the weekend. Nick works all weekend, which he usually does. Mitchell has a birthday party to go to, so me and Ryland will just be hangin out. If it’s nice enough we will probably go for a walk, speaking of walks. Between OT and PT on Friday we have 40 mins so I thought I would run to the Dollar Store which is 5 blocks from CCHS, me and Ryland walked down there, since today was so nice. It was funny, the street (41st) we have to walk down is a very busy street in Sioux Falls, well Ryland just loved it, watching all the cars go by and motorcycles were the best to hear go by. That’s about it.
~Summer
Tuesday, September 30, 2008 1:38 AM CDT
After a very busy week last week is nice to know I have a few days to catch up this week on stuff. Nathan and Mitchell both have Football games and Ryland has his therapies but no other doctor appts. We do have a Make A Wish event Fri and Sat but it’s a fun event and we all get to hang out.
Ryland's preschool had there field trip to the Apple Orchard on Tuesday. I would like to say that went good but he was a little crabby, I think from the messed up lack of sleep on Mon. He did like the hay ride and we did get a couple of good pictures but for the most part he was just tired.
Ryland’s Swallow Study went good and there was no aspiration, so he can continue with food. For those of you who may not know, many kids with HPE can’t eat by mouth. We were told that after he had a feeding tube that he may not eat and forget how to eat by mouth, so him eating and drinking his bottle is a big thing. He was a very good boy during the tests, so he got a brownie and ice cream afterwards. His therapies all went good and during OT got to try out some new switch toys. (He loved the Drum one) He amazes me every time I see him in Therapy, you can see the determination on his face. On Friday he also was talking up a storm. I wish I would have had my camera because if you asked him something he would answer you back with sound. I swear I heard him say Hi a couple times, so we’ve been working on that.
Saturday we had our Star Wars Clone Wars party, I won a party thing from Cartoon Network. My aunt and my cousin son Max came from IA. It was nice to see them and my Aunt hung out with Ryland a little before everyone else came. I don’t know if I mentioned this or not but my aunt drives a Special Needs van for school, so she around kids similar to Ryland, she’s been doing it for about a year now. My mom and brother showed up a little later, along with his friend and her daughter, Grace. Grace is just a couple month younger than Ryland but looks much older. She is a sweet little girl. I got a very cute picture of Grace trying to hold Ryland, they play so good together. Nathan, Mitchell and Max had fun playing. With so many people around I just kind of got to be the hostess and let everyone else deal with the kids. We all had a good time and also got to try out the new park, which is only a block away. Ryland had a blast, of course and Grace Had to push Rylands Wheel Chair.
School is going good for Ryland. He has his good and bad days but everyone does. Nathan and Mitchell are doing good in school. I still find it hard to believe that Nathan is in 8th grade and Mitchell is in 5th. Now with the weather getting cooling I’ll start to see them more. Every since April they have spent a lot of time outside. I look outside and see the leaves falling and wonder were did the summer go to.
If your wondering about Nick's cake he loves those orange circus peanuts and doesn't really eat cake, so I came up with a Circus Peanut Cake.
Summer
Monday, September 22, 2008 3:34 PM CDT
Ryland had a EEG his morning. It was a little complicating. They wanted him to have only 4 hours of sleep but tired enough to fall asleep. So starting at noon of Sunday I tried getting him to take a nap thinking he would then stay up all night because he’s done that before. Well, we also had to go to my nephew’s party and we did want to miss that because it was at a motel with a pool. So the little stinker fell asleep when we got to the party, go figure. When Nick got to the party we woke up Ryland so he could swim. I was thinking this was not going to go well. Then to add to that I had been ask to babysit over night all week but thank god that did go thought and I didn’t have to.
So anyways about 11 I knew he had to sleep some so we started rocking him and he was sleeping by 12:30 (good). I set my alarm on the phone for 3am to get up and wake him up. 3am and I start to wake up Ryland. When I say start it’s because it took me a hour to get him up and watching TV. I turned on all the lights upstairs, put cool water on him, tickled him and moved him around and he would fall back asleep. I’m lucky that they have cartoons on at 4am and when Ryland started watching them he was up. At 6am the alarm went off and I started getting everything ready. If your wondering, No, I didn’t get much sleep either, maybe 2 hours.
So off to Sioux Falls at 7:20, (should have remember traffic might be busy). Got all checked in and the receptionist came out and says they are just going to come down here and drawn blood for sodium check, I was like, a, no, he has a Port a Cath and that’s the only way you are going to get anything from him. So a couple of calls and we went to Peds Out patient for a quick Port access, 3mins and we were done. Couple mins after that we were headed to get the EEG started. For those of you who don’t know what they do for a EEG I’ll explain a little. They have to mark the head with permanent marker in about 20 different spots, they use the gritty cleaner stuff so the little electrodes stick along with the paste. After getting those all set they wrap the head to help keep them in place. To cut his short, Ryland did fall asleep after they dimmed the lights. The only problem I had with everything was the EEG only lasted for a hour. He never did his jumping and crying thing because he was sleeping most of the time. Well, we will have to see, I hope nothing shows up but then again I don’t think it lasted long enough.
He woke with a smile after only about 45 mins of sleep. Got all the stuff off his head and spent 15mins trying to wash all the gunk out of his hair, he still has green permanent marker on his head. We were done with the EEG by Noon.
Ryland also has a Swallow Study on Wed. to make such everything is going down like it should be and we can keep letting him eat some stuff by mouth and Swimming later in the day. Tues he has a field trip to the Apple Orchard for Preschool. Thursdays Nathan and Mitchell both have Football games. Friday he has therapies and Saturday we are having a Cartoon Network Star Wars Clone Wars Party. Sunday has nothing written on that Day.
We are still wondering what we are going to do for Rylands BIG 5th birthday. It’s a very big birthday for Ryland, turning 5 is a big thing for any HPE kid. I have a long list of stuff I would love to get for Ryland but many are just way to expensive. Just to name a few, special needs tricycle (bike), a HARD medical bed and maybe even a Power Wheel Chair. This will sound weird but if you would like to get something for Ryland’s birthday, get some rechargeable AA batteries and regular D batteries for T.J Bearytales. I know no ones going to go out and spent $1,200 for a tricycle. Almost all of Rylands toys, that he likes take AA batteries and they get used a lot.
One more thing: Families For HoPE (FFH) is having a Fall Fundraising and are selling hats, sweatshirts, blanket and other things with FFH logo on them. You can download a order form at www.familiesforhope.org. till Oct. 10th.
Happy 30th Birthday Nick aka Daddy!!!!!!!!!!
Summer
By the time I got done writing this Ryland was sleeping in my arms.
Saturday, September 20, 2008 3:24 AM CDT
Ryland did really good in PT on Friday. He sat on a bench for 23 seconds, I think it was more like 30, he had his hands on the bench flat with his head up for that long. It was so cool and got tears in my eyes as he sat like such a big boy. He been doing great with holding his head up. In OT he really like the animal crackers and actually picked them over swinging, which he never does. He’s been working on colors more and is doing so good. Today we worked on them at home and every time I said Ryland which one is yellow, I swear he would say yellow, so when Nick got home I showed him and he to thought that is what Ryland was trying to say. For those of you who don’t know, Ryland loves yellow and always has, I think it all started with a yellow stuffed puppy dog and also a yellow ducky that he’s had since his first Easter.
With all the good things I hate to mention that we are taking him in on Monday for a EEG. He’s been doing this jerking thing and it will come out to no where. Also he’s been waking up at 4-5am almost every morning crying like something has scared him and he goes right back to sleep when I put him in bed with me. I’m hoping it’s nothing but he’s never done anything like these episodes of jerking. It will be a busy week because he also has a swallow study on Wed. which is also important because if he is aspirating foods or formula, OT won’t be able to work with eating. So we are hoping for the best.
Summer
Wednesday, September 17, 2008 12:20 AM CDT
Someone posted this poem on the HPE site and just wanted to share, it is very true in how my life is. Ryland is doing good, little stuffy but is doing pretty good with it and his hand is healing good (look at previous journal entry for info on that).
Summer
Someone I Love
By Lori Hickman
Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...
And still others don't understand what it is to be me.. they aren't living in my skin.
Friday, September 12, 2008 1:05 AM CDT
Today (Thurs) Ryland got to try out a Power Wheelchair. It was one he could control with pushing his head back to go forward and left and right he would have to push over to move either way all with his head. He did good and really like moving. I think he knew he was moving it but not quite sure how he was moving it. Over the last couple month we’ve been working on him keeping his head up and sitting him up straight in his wheelchair and his seat at home. He is doing great and even sat up last week for 19 seconds using his hands to hold himself up. I know there’s going to be a lot more before Ins. Would approve a Power Wheelchair but this is the beginning. I can just see it in Ryland that he would love to have the option of moving himself around. Even if he doesn’t pass the test for Ins. To approve it I’m going to try and see what and how much it would cost to get one. We aren’t giving up on the walking but Ryland isn’t doing any better or progressing much with that. He know how to move it but he’s been not wanting to walk in it much, he much rather have me hold him and let him take steps.
Therapies are still the same and he still LOVES swimming. Last week Ryland bit his thumb really bad Monday morning, I was half asleep and woke up to him screaming. I don’t think I have ever got out of bed so fast. He broke open the skin in 4 spots, it is finally looking better. We did take him to the doctor and they put him on some antibiotics to make sure he didn’t get a infection. So for the last week and a half everyone has had to keep him from putting his hands in his mouth and that’s not always easy to do.
As far as school, well it’s school.
Ryland is enjoying the cooler weather, he loves being outside. Mitchell’s had a couple Football games and Ryland will sit and just watch the game or watch the little kids running around (and flirt with the girls). We took a couple walks but it’s been so busy we haven’t had much time.
I guess with Ryland being healthy there’s not much to write, which is nice.
If you get a chance you'll have to stop by ^Angel Sammy^ site, there's been some cool stuff going on with Families for HoPE. SammyYammy.com
Summer
I came across this article and just wanted to share it, it's pretty long. You can also go the this site to view it better http://www.dsact.com/images/docs/theimpact08.pdf
The Impact of Childhood Disability: The Parent's Struggle
by Ken Moses, Ph.D.
"I was taught that the way to deal with adversity or pain was to "tough it out." If you could avoid
showing the pain. then you had "beaten the rap." and dealt with the problem competently. I am a
psychologist who works with people who are grieving over profound losses. Few would argue
that facing the devastating and continuing loss of having an impaired child is among the most
painful experiences that a person can confront. After working with parents of the impaired for
many years, I have come to believe that I was given bad advice. I have come to believe that pain
is the solution, not the problem.
Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections
into the future. Children are our second chance, our ultimate "life products." the reflection and
extension of our very being. To know that a human life exists that grows from our genes, our
bodies, that is a result of our existence, brings a measure of spirituality into the most hardened
individual. Something basic to our sense of being is stirred when we witness the miracle of the
continuity of life. What happens when this core experience is marred irreversibly by disability?
How does a parent survive the devastation of a handicap in their child that shatters their heartfelt
dream? How do they go on? How can they help their child, their other children, themselves?
Before I started working in this field, I noted that people who faced adversity basically became
better or worse: none stayed the same. What made the difference? Some parents seem to pull
their lives together around their child's impairment, others go to pieces. Over fifteen years ago. I
ran my first parent group comprised of mothers of children with special needs. These people
helped me enormously as I started to answer some of the important questions that relate to
coping with childhood impairment.
I began the group using traditional group psychotherapy methods, an approach designed to
intervene on psycho pathology. That approach did not work for a simple reason: those mothers
were not suffering from pathologies, they were reeling from the impact of having disabled
children. Gradually, I let go of the old ways of doing things and permitted myself to listen and
learn from this courageous group of parents. Slowly, a pattern emerged that surprised me. It
became evident that these people were manifesting a grieving process. This left me confused. It
was clear that they were alternately anxious, angry, denying, guilty, depressed or fearful, but
they were not internally "disturbed" people. Conversations focused on experiencing regrets,
being overwhelmed, and other feelings common to people who are bereaved. My puzzlement:
"Who died?" At that time, my understanding of grief was simple, concrete, and exclusively tied
to death.
What followed was a remarkable process. The group members struggled with a number of
concepts that led us all to some powerful contemplations about parental grief. Is it the loss of a
"normal" child? Is it the disruption of one's "normal" lifestyle? Is it the sense of shame or
humiliation that is experienced with family, friends, or other peers? Is it the profound
disappointment that some experienced with the ineffective responses of their ostensible support
group? We might have shared such thoughts endlessly, until I formulated a key question that
helped to bring these diffused feelings and thoughts into focus. It came out innocently enough:
"Think back to when you were anticipating the birth of your child. Who (or what) was this child
to have been for you? What followed was a remarkable outpouring of poignant, anguished
human sharing that. lo this day. serves as the foundation for understanding and working with
parents of impaired children.
Parents attach to children through core-level dreams, fantasies, illusions, and projections into the
future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly
spoils a parent's fundamental. heart-felt yearning. Disability shatters the dreams, fantasies,
illusions, and projections into the future that parents generate as pan of their struggle to
accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are
key to the meaning of their existence, to their sense of being. Recovering from such a loss
depends on one's ability to separate from the lost dream, and to generate new. more attainable,
dreams.
As disability bluntly shatters the dreams, parents face a complicated, draining, challenging,
frightening, and consuming task. They must raise the child they have, while letting go of the
child they dreamed of. They must go on with their lives, cope with their child as he or she is
now, let go of the lost dreams, and generate new dreams. To do all this, the parent must
experience the process of grieving.
Grieving is an unlearned, spontaneous, and self-sufficient process. It consists of states of feeling
that provide the opportunity for self-examination, leading to both internal and external change.
The grieving states that facilitate separation from a lost dream are as follows: denial, anxiety,
fear, guilt, depression, and anger. The word "states" is used, instead of "stages," to emphasize
grieving is not a step-by-step process that evolves through discrete stages. This depletion of what
a parent goes through is a presentation of theory, not irrefutable fact. It is meant to help people
find their own ways of dealing with the unspeakable. I look at it as a map, not a recipe. A recipe
tells people what to do if they desire a particular result. A map, on the other hand, is one person's
partial impression of reality that can be used by another lo help them get to where they wish to
go.
When theories of grieving are used as a recipe to produce acceptance, two false premises are
inflicted on parents. The premise that grieving should move through a specific order is flatly
inaccurate. A consistent pattern is not evident in people dealing with loss! Worse. when people
believe that they are supposed to grieve in a certain way. they often end up thinking they are
doing it wrong. Secondly, the concept of acceptance is totally unfounded. In almost twenty years
of working with bereaved people, as well as dealing with my own losses, I have never seen
anyone achieve acceptance of loss, only acknowledgment. Belief in the concept of acceptance
leads parents into feeling like failures for not being able to attain it. Any use of grieving theory
as a recipe is strongly discouraged.
Though the feeling states of grieving do not adhere to any strict order, there is a loose pattern
that can be detected. Denial is always first, but may reemerge again and again, as often as the
parent needs to experience it. Anxiety generally follows denial, but it can follow other feeling
stales as well. It is not uncommon for two or more feeling states to be experienced at the same
time. Different families are more or less comfortable with showing certain feelings while
discouraging others. In short, each person who goes through the grieving process experiences
each of the feeling states, but does so in their own unique manner and order.
It is clear that this spontaneous, unlearned grieving process is central to the well-being of the
child and parent alike. It is the only way that one can separate from a lost, cherished dream.
Many people do not make it. They have their dreams shattered by disability and collapse
emotionally under the assault. Resisting the grieving process, they hold feelings in, blame self or
others, become embittered, dependent, or even bizarre in their interactions. They can range from
the selfless crusader to the deserter, from the alcoholic to the workaholic. from the outrageously
high-strung to the person who barely moves or talks. However they manifest their stuckness,
these are the people who have become worse, not better, in response to loss. These are the people
who could not or would not experience the feelings of grieving. Many of them resisted the
process because their subculture (their family, neighbors, church, schools, and friends) sent out a
consistent message: the feelings of grieving are not acceptable! Others foundered because they
were stuck emotionally before they had their impaired child. Regardless of background, people
become worse if they resist experiencing and sharing the spontaneous feelings of grieving. Each
feeling stale, no matter how negative, serves a specific and helpful function. To separate from a
lost dream, one must experience and share denial, anxiety. fear, guilt, depression and anger in
whatever order or manner the feelings surface.
The Feeling States of Grieving
Denial
People who deny are considered stupid, obstructionists, dull or deliberately irritating by many
who have to deal with them. None of that is true. Parents of impaired children manifest denial as
a normal course of trying to deal competently with loss. It is impossible to live life fully while
maintaining an awareness of the awful things that can happen to people. Most people routinely
shield themselves with such thoughts as "The terrible things that happen to other people can't
happen to me, because..." This system works fine as long as nothing terrible happens, but when it
does, no one is prepared to deal with it. This is where denial in the service of grieving comes in.
Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the
inner strengths needed to confront what has really happened, and to find the people and resources
needed to deal with a crisis for which one could not be prepared.
Anxiety
When a person loses a dream that is central to their being, they are forced to make major changes
within themselves and within their environment. To deal with having an impaired child, parents
go through dramatic changes that affect their attitudes, priorities, values, and beliefs, as well as
altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the
energy needed to make these changes. Further, it gives focus to that energy so that the changes
can be actualized. Anxiety is the inner source of the need to act.
Anxiety is generally seen as hysterical. inappropriate, and unacceptable. The culture's message is
clear. As a rule we advise anxious people to "calm down." lo take medication, or to use alcohol
as a "solution" for the "problem" of anxiety. These ^solutions keep the parent from changing and
often make things worse for all concerned. Realities must be faced, stressful as they might be. It
does not take long for most parents to become aware that they, not some professional, are their
child's medical, educational, and therapy managers, even though they may have minimal
knowledge of these areas. That alone should drive home the urgent need for energies to be
mobilized and focused by the crucial feeling of anxiety.
Fear
As anxiety mobilizes people to deal with change, fear is a warning that alarms the person to the
seriousness of the internal changes that are demanded. One's sense of balance and order are
dramatically challenged when one confronts a meaningful loss. The parents experience the terror
of knowing that they will be required to change on a fundamental level, against their will, with
full understanding that the process of internal change is very difficult.
Significant losses produce a profound sense of abandonment and vulnerability. We have a
number of sayings to cope with this level of fear, e.g.. "It is far better to have loved and lost, than
to have never loved at all." Each person must find their own words to confront the sense of
abandonment and vulnerability generated by a significant loss. Most parents experience the fear
of vulnerability about having more children after they have had an impaired child, or about
"over-protectionism," the gut-wrenching fear of permitting their impaired child to do anything
that feels risky. Given the ways that this part of grieving is manifest, it should not be difficult to
see that fear is the medium that encourages the struggle to reattach, to love again in the face of a
loss.
Guilt
Parents of impaired children manifest guilt through the normal course of grieving and are often
criticized for doing so. Guilt is a feeling state that has become so identified with being neurotic
that people feel guilty about feeling guilty. Since sharing such feelings often evokes negative
judgments, it can be difficult for a sophisticated parent to talk about guilt freely. On the surface,
guilt-ridden people may appear not only neurotic. but superstitious, ignorant and primitive. They
are often viewed as unpleasant. uncomfortable people to be with and therefore are dismissed or
treated harshly by friends, family, and professionals.
Generally, parents of impaired children express guilt in one of three ways. One way is by telling
a story that explains how they are responsible for their child's handicap. Their story is often
accurate and, on the whole, persuasive. The current emphasis on the prevention of birth defects
has brought many parents to fee] that they caused their child's impairment. The issue is not the
logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the
child's impairment is punished for a past inappropriate thought, feeling, or action. One of the
more common "guilt thoughts" is regretting the pregnancy sometime during gestation. When
something goes wrong after that thought occurs, "it's all my fault" becomes a natural outcome.
Lastly, guilt can be expressed through the parent's belief that good things happen to good people,
and bad things happen to bad people. Because parents have an impaired child, they must be bad
people. Because they have an impaired child, they must be bad people and consequently feel
shame and guilt. How can such painful explanations of tragedy be useful to bereaved
individuals? Simply by being explanations. Guilt "explains" the unexplainable.
Human beings begin to question the "why" of things from very early on in their lives. What are
the rules which govern the way of things: cause and effect as well as right and wrong? A most
important "why" concerns how one's "right" or "wrong" actions effect one's life. What difference
does it make that a person is moral, ethical, legal, caring, ambitious? How is it that one does or
does not influence the events of one's life? Some of us found early and easy answers to these
questions and have not considered them since. After a loss. such questions cannot be answered in
an ordinary' fashion. Rather, they must be addressed through the kind of grief-related struggles
addressed here. When people confront a loss. the beliefs they held regarding cause and effect,
right and wrong, and their impact upon life are deeply shaken. The order of things is totally upset
when an innocent child suffers. The parent experiences deep pain. pain that can be used to
reorder the rightness of the world. Guilt is the feeling state that facilitates this struggle io reorder.
Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It
feels better lo do that than to believe that they have no influence on anything! Guilt, in this sense,
helps one to redefine the issue of cause and responsibility in the light of loss.
Depression
A common response to loss often is characterized by profound and painful sobbing. Parents
report that at limes it feels as though the tears will never slop. There is a rest. but then for no
apparent reason, waves of despair and anguish wash over the parent once more. Between the
tears, one can sit alone, staring silently. Those periods of silence can last well beyond the periods
of tears. The thoughts of depression take over. thoughts like: "What's the use of trying, it's all
over." or "Nothing I do matters, because nothing will change what has happened to my child!"
Depression is subtly rejected and judged as pathological by much of our culture. When people
display such feelings, they are often told to "cheer up", given medication, or offered distractions.
Such responses are inappropriate, for depression is part of normal, necessary, and growth-ful
grieving. It attends to another aspect of a basic human struggle that loss stirs.
As we mature, we develop and modify our definitions of the following words: competence,
capability, value, and potency. They are words of profound personal significance. They are the
criteria that people use to decide if they are OK or not. What criteria does a person have to meet
to feel like a competent parent, a capable worker, a valued friend, or a strong person? Each
person determines these standards privately, even secretly. When parents are confronted with an
impaired child, whatever definitions they held for competency, capability, value, and potency
usually no longer apply. How does a mother feel competent when she has a retarded daughter?
She can't use the measures of her peers, like having a daughter graduate from college, or become
homecoming queen. What is the worth of a father who cannot "fix" what is broken in his
impaired son? Out of this struggle of defining one's worth come the frightening feelings of
helplessness. hopelessness, and haplessness. Faced with loss. a parent feels unable to act
effectively (helpless), unable to imagine that things will ever get better (hopelessness), and
unable to believe that their lives are touched by good luck (hapless).
Such feelings are terrifying for both the parents and those around them. For that reason, it is hard
to see that depression is a normal and necessary part of the grieving process. Depression is the
medium that helps parents come to new definitions of what it takes to be a competent, capable,
valuable and strong people, even though their child has impairments that they cannot cure.
Anger
Anger, for many people, is the most disconcerting of the feeling states. It too is a natural and
necessary part of the grieving process. Parents feel anger at the harm done to their child and the
shattering of their dreams. When one encounters a significant loss, it is likely that one's internal
sense of justice is severely challenged. To continue to trust in the world, one must have a sense
of justice that confirms an orderliness and fairness to the way the world works.
A parent can righteously demand to know why he or she has an impaired child: "Why me, why
not you!" Implicit in the question is the notion that there must be good reason that such a thing
happens to one parent and not to another. A parent's concept of justice, like value and worth, is
another unique product of that individual's thinking and development. When confronted with the
traumatic loss of a dream, that internal sense of justice is violated. Crying out in the face of
injustice, the parent develops new ways to look at justice in the world. "What. after all, is fair, if
this can happen?" Anger is the medium through which a parent redefines fairness and justice. It
integrates new beliefs within the deepest emotional levels of the grieving parent.
Unfortunately, anger is an emotion that is actively rejected by the culture at large and by people
closest to the parent. The angry parent experiences rejection by others, confusion about feeling
anger and acting out the feeling, the feeling of being out of control. All of this makes it very
difficult for this important feeling to run its course.
Anger also poses other dilemmas. Unlike the other feeling states of grieving. anger is directed
toward someone or something. Who (or what) is the object of parental anger? This question
deeply distresses most parents, because the honest answer is often so troubling that many people
avoid asking themselves the question. The unacceptable answer. of course, is that the impaired
child is the object of anger. After all. who has entered this parent's life, disrupted it. caused
immeasurable pain, and drained the parent's time, energy, and money.
Most parents were raised to believe that feeling and expressing negative feelings about one's
child is taboo. "The child never asked to be handicapped, let alone to be born. How can one be
reasonably angry at this child?" If the child is blameless, then it must be unreasonable to feel
anger toward the child—even though one does! The conflict between what parents feel and what
they can permit themselves to express can cause a return to denial. Another outcome of this
conflict is that the parent can displace the anger onto others. Spouses, non-impaired siblings of
the impaired child, and professionals are all possible targets of this displaced anger.
When considering the feeling states of grieving, especially the feeling state of anger, logic and
reason are irrelevant. Where is the logic behind cursing a twig that one has just tripped on? What
is the purpose of kicking a flat tire? What good does it do to admonish anyone after they have
already done the wrong thing? Expressing simple anger clears the way to getting on with the task
at hand. Expressing anger opens the way to address the meaning of justice (though enacting
angry behavior sidetracks the parent from the task at hand). While there is no logic, there is
purpose and function to the expression of angry feelings. As events occur that violate one's sense
of justice, the outrage must be expressed. Those expressions help lo redefine one's concepts of
fairness and justice.
The parent of an impaired child separates from dreams that were shattered by impairment
through grieving. Denial, anxiety, fear. depression, guilt. and anger all emerge. If they are shared
with other people, these feelings help parents grow and benefit from what might be the worst
tragedy of their lives. Grief must be shared deeply and fully until the underlying issues are
revealed. The reopening of these issues changes the parent's world view. New perceptions of
themselves and their world serve as a solid foundation for coping with the disability and for
personal growth. Yielding to the grieving process helps parents find the inner strength and
external support needed to face profound loss', lo mobilize and focus the energies needed to
change their lives; to reattach to new dreams and loves in spite of feeling abandoned and
vulnerable; to redefine their criteria for competence, capability, value, and potency; to reassess
their sense of significance. responsibility, and impact upon the world around them; and to
develop new beliefs about the universal justice system that makes the world a tolerable place to
live. even though terrible losses can occur. The culturally rejected feeling states of denial,
anxiety, fear. depression, guilt, and anger may be used in surprisingly positive ways when the
feelings are fully shared.
Perhaps you can now see why I think that experiencing and sharing the pain is the solution, not
the problem. Through my life I have experienced many losses. For many years I dealt with these
losses by stifling feelings, workaholism, toughing-it-out, and innumerable other ways that kept
me from experiencing what had happened to me. I became one of the "walking wounded" that I
was committed to helping. Ironically, it was not until I myself had a child with impairments that
I began to take the advice that I had so freely given to other parents. I started to yield to the
natural and necessary process of grieving. Like everyone else. I discovered that only now am I
growing with the impact of the loss. I will continue to grieve and to grow as my child and I
develop and experience new losses and new strengths.
Thursday, August 28, 2008 1:34 AM CDT
Ryland has been doing pretty good. He started swimming back up and he was pretty happy about that. We went to Wild Water West on Sunday, the water was a little cold so Ryland didn’t get to do a lot of swimming. We went around the lazy river a couple times and he liked that. Me and the boys all went along with my mom and brother Danny. It was nice to have mom my watch Ryland while I got to hang out with Nathan and Mitchell. I think I was the only mom going across the floating Lily Pads and Alligators but the kids got a kick out of it. Ryland really enjoyed just checking things out.
On Saturday we went to the Open House of the new Make A Wish building. We had fun and Ryland loved all the attention. It was very nice out and the weather was perfect for Ryland.
The last couple weeks it’s just been getting the rest of school stuff purchased, doctor appts and going to Ryland different therapies. We’ve been working on different colors with Ryland and he now has yellow and pink down. We have also been working on choosing different things, just two things at a time and he’s been looking and also been getting him to try to touch what he wants, it may take a couple minutes to get his hand to touch it but he works really hard. He has a power wheel chair assessment coming up and we are hoping he can get the figured out, how cool would that be if he would have more independence. I know he can do it but it make take longer than the therapist can work on it. If he does get it figured out and Ins. would pay for a Power Wheel Chair, then we would have to get a adapted Mini Van with a lift (anyone have $20,000 laying around) used ones that are 5 years old go for about that. Some thing will come up when that day comes.
I am really looking forward to the next couple months of therapy, just to see what Ryland can do. I’m determined to get him to know his colors by the end of this year, maybe even start on some shapes. We may have hit a little bump with colors, he had trouble with some, so we are thinking he may be a little colorblind. No way of really telling. Might also try to get Speech at CCHS fit into our schedule, may have to wait till Football is over with.
Speaking of Football Nathan and Mitchell will be starting there games soon. I know Ryland will be happy, since he loves the noise and the action of the game. He loves the loud parents.lol
Hard to believe Ryland’s Birthday is less than 3 months away. Hoping that he will be in a new bed by than. If Ins. Doesn’t pay for one we are looking at getting a bunk bed with a full size bed on the bottom and a twin on top. We would have to make a couple adjustments to get it to work but I have some good ideas. Nathan and Mitchell are always wanting to sleep with Ryland.
*If anyone is wondering what Ryland could use here’s a couple things. AA rechargeable batteries, Dr, Brown size 3 nipples (he goes through a lot), long socks from Old Navy, Children’s Place or Target for his braces he wears a size 7 shoe. Money always helps, that way we can get toys that will work for him, most adaptive toys are $40 or more. He’s still loves the Wonder Pets, Wiggles and Little Einstein’s, DVD’s are always helpful. He also has a TJ Bearytales and could use a couple new books with cassettes.
One more thing. It was Ryland’s first week back at Preschool. It’s looking like it will take a couple weeks to get him back into the swing of things. He’s doesn’t like change. Well, I’ll try to post some new pictures.
~Summer
Saturday, August 23, 2008 10:43 AM CDT
This story was in The Los Angeles Times on Friday.
The 'R-word' is no joke
For the intellectually disabled and their families, it's just as bad as the "N"-word.
By Maria Shriver
August 22, 2008
This has been a year filled with teachable political moments. Racism, sexism, ageism and "change" have been debated at kitchen tables and water coolers across America. But this last week, those gathered around my kitchen table have been consumed with another discussion, one that is not Democratic or Republican -- it's the "R-word" debate.
The "R-word" stands for "retard." For the 6 million to 8 million Americans with intellectual disabilities and their families, this word and its hurtful use is equal to the impact of the "N-word" on an African American.
The reason it's kitchen-table fodder is because of the Dreamworks film "Tropic Thunder," which topped the box-office charts when it opened last weekend and which will attract many more moviegoers this weekend. In the R-rated film, which I've seen, a character named Simple Jack is a caricature of a person with a developmental disability. In one of the scenes, the character played by Robert Downey Jr. chastises Ben Stiller's character for "going full retard," and the "R-word" is repeated many times.
As a journalist, I respect the right to freedom of speech, and my kids will tell you I laugh the loudest when we see a comedy. But as the niece of someone who had a developmental disability, and as a member of the board of directors of Special Olympics International, I know how hurtful the "R-word" is to someone with a disability. I know why "Tropic Thunder's" opening was met by protests on behalf of the intellectually disabled.
Listen to actor Eddie Barbanell, who serves on the Special Olympics board with me, and he will tell you in very emotional terms how the use of that word has made him feel rejected, stupid, demeaned.
Or you can talk to Special Olympics athlete Loretta Claiborne, who speaks on behalf of millions when she describes how the "R-word" has been used to mock and degrade her. She asks all of us to stop using this word without regard to its effect on the hearts and minds of people with disabilities.
There is an old saying: "Sticks and stones will break my bones but names will never hurt me." Even when I chanted it as a child, I never believed it. Words do hurt -- they break people's spirits, they break people's dreams, they break people's hearts.
Kids will see "Tropic Thunder," no matter the rating, and when they leave the theater and go out to their schools, their homes and their communities, they'll call each other the "R-word" because they think it's funny. They'll do it without any idea or regard to how it makes a person with a disability feel.
Too many in the intellectually disabled movement cannot speak out for themselves. It is up to their families and those of us who advocate on their behalf to explain that calling someone by the "R-word" is no longer acceptable and is anything but funny.
It's not acceptable in a movie theater; it's not acceptable on a playground. It's not acceptable that college coaches use it to chastise athletes. It's not OK to use it in a classroom or a boardroom.
"Tropic Thunder" is giving Claiborne, Barbanell and many other individuals and organizations that serve those with special needs -- the Special Olympics, the National Down Syndrome Society, the Arc, the American Assn. of People with Disabilities, Parent to Parent-USA -- a teachable moment. They are ready to join with the entertainment industry to change minds. Dreamworks' decision to include a public service announcement with DVDs of "Tropic Thunder" is an important first step, but far more needs to be done.
Just as important, parents must talk to kids at our kitchen tables about how we have felt when someone called us stupid, idiotic or lame. Because once we put ourselves in someone else's shoes, certain names just aren't that funny any more.
I often quote the Hopi prayer that tells us not to look outside ourselves for a leader. It tells us that we are the ones we have been waiting for. We can exchange one "R-word" for another: respect. We can teach our children that name-calling hurts.
Let's makes the "R-word" as unacceptable as the "N-word." Think of all we can accomplish if we work together.
It's one thing in this political season that shouldn't require a water-cooler debate.
Maria Shriver is the first lady of California.
Monday, August 11, 2008 2:17 AM CDT
I thought I better update Ryland’s site. Ryland is doing really good. With some cooler weather we have been able to go out later in the day, I guess you could say at night. Anything over 80 is almost just to much for Ryland. Even in the car he gets hot with the air on high, but our Jeep also doesn’t get air in the back seat the greatest either.
Ryland did really good last week at swimming, he loves the water. He didn’t have therapy on Friday since we went to my great uncles funeral in Iowa. It was a nice funeral service. It was nice to see that side of the family and everyone always enjoys playing with Ryland and Ryland loved all the attention. We went to my aunts after and Nathan and Mitchell played with my cousin son Max. If you’re wondering what Ryland did, well he played with my aunts cats, he loved just to watch them and found it funny when they would try to lick his face. No that wasn’t the ending of our day. My brother Danny had gotten tickets for me, my mom and the boys to go to Catfish Bay (Water ski show). It was a perfect night, just the right temp. Ryland watched the show and during the break we went and put his feet in the water, yah he thought he was going to go swimming.
So after a long Friday that started at 7am it was nice to have a quiet weekend. I only think I needed to catch up on was laundry and without a dryer it’s been taking longer. I did decide to go the laundry mat and dry some clothes because hanging them just was taking to long. I didn’t get it all caught up but will Monday.
The last PT Ryland had we talked about getting Ryland in a electric wheel chair to see what he can do. Well, we got a appt. set up and we can see what will happen. I know Ryland isn’t going to figure it out on the first try but I have a good feeling he will know after a couple tries. Also at the last PT Ryland tried out a scooter crawler thing and he did good, he knew he had to move his legs but he was having problems keeping his arms in front of him. At home if we put him on his stomach he either get himself moving forward or backward, usually backward, not sure how he does it but he does. We have the same problem at home, he keeps his arms to the side.
One more funny story two weeks ago at PT, Ryland’s PT Kate talked about taking the rolling over goal off of his goals because he wasn’t doing it on his own. Well, Ryland the little stinker was rolling from back to stomach the rest of the day at home.
As far as OT things are the same, he’s doing good and chewing. He does have certain things that he still doesn’t like the eat. I’m looking into getting some Speech Therapy started, I’ve gotten some good suggestions from another HPE mom. I would love to add more of all therapies but Ins and gas prices kind of hinder more therapies. If I had a extra $600 a month I would probably put it towards Ryland and getting more help for him, I often wonder if we made more money would Ryland be doing better, would he be walking more in his walker or using a power wheel chair already, maybe using a device to communicate with us, it’s always at the back of my mind. But if you label some special needs prices go up.
Summer
New picture is Uncle Danny showing Ryland the water skiers coming in
Sunday, August 3, 2008 0:10 AM CDT
I just copied this from our Family blog, haven't had much time to update:
Aug 2nd 2008
We had a pretty good week. Same old same old. Ryland had swimming, OT and PT at CCHS. Those went good and he got to try some new things out. Mitchell had football equipment pickup on Wed and he starts practice on Aug 5th. I did get almost 2 weeks of no sporting events.lol
I guess the other thing about this week was the weather, it was warm and humid, two things Ryland can't handle. So we've spent alot of time inside. Even in the car he gets a little warm, with the air going full boar.
I would have said our week went great but last night the dryer stopped working. A month ago we would have just been able to go out and buy a new one but with going to Indy and spending $400 on new tires we now don't have the money. We don't do credit cards, everything we have has been bought and paid for, sometimes it's not always a good thing, like now. Not sure what we are going to do. The next week it's going to be nice out so I could hang out the clothing but we don't have a clothing line. Also our dryer is only like maybe 4 years old but it was a cheapie to start with and we do, do lots of laudry. Just prayer something will come up.
Now for this weekend it is looking like we are staying in. Mitchell went with his dad this weekend, so I do have a little break. Mitchell is sometimes a little stinker and tests me. It also gives Nathan a break from Mitchell being his shadow. But I do miss him when he's gone, he still gives me hugs in the morning, Nathan now thinks he's to old for the stuff. I will have to think of some things to do with Ryland. I know he has to be bored of watching the same cartoons and movies. Well off to see if I can figure out a way to dry two loads of laundry.
Oh, my brother finally sent pictures of my niece. Makayla is 16 months old, they live in NC. I was hoping that they would come this summer up but airline tickets are just a little to high for them now. I really miss not having my brother around, he was great with Nathan and Mitchell when they were little and I miss not getting to see my niece grow up. Oh, the picture of Ryland he was being a Wonder Pet, he favorite show.
July 28th 2008
Everything is going good. Me and Ryland got a little cold, I got the worst of it. Ryland did need a little bit of suction but is better now.
So this last weekend was the last baseball tournment. The first game started at 8am on Sat. so we had to get up early and head out. It was only a 30min drive but Ryland doesn't like to be woke up. So anyways on the way to the tournament Ryland was grinding his teeth alot. So I ask Mitchell to get Ryland chewing necklace thing out and put in it his mouth. Well, 5mins before getting to the the baseball field, Mitchell started screaming. Yes, Ryland bit him, on his right hand, his pitching hand. He bit him really good, broke the skin on both sides of his pointer finger. So anyway Mitchell couldn't pitch and had a hard time playing. Later in the day he had another game but couldn't pitch but did get some good hits. So on Sunday there was the final two games. Well, to make this short it rained almost all morning off and on and they cancelled it all. After driving and getting everything ready, nothing. I am glad I was not the only one peed about the whole weekend, almost every parent was.
Saturday went also went to a friends son's 4th birthday party.
I've finally got everything from our trip wash and put away. Things are back to normal and Ryland is sleeping better. School is less than a month away so I got started early on school supplies. There still is buying shoes and clothes so I'm not all done. It's hard to believe Nathan will be in 8th grade, Mitchell in 5th and Ryland will be in Preschool again. I'm still trying to figure out where the last 2 months went. Oh, last weekend me and the kids went to a Canaries baseball game with mom my, brother, aunt, cousin's son, great aunt and 2nd cousin. It was fun to see everyone and we had a blast. They had fireworks that night, boy was Ryland having a blast, he loved the noise and lights. That's about it.
~Summer
Friday, July 18, 2008 10:02 AM CDT
~Sat. July 19th~
The new picture is of Ryland and Grayson, or should I say the twins, that's what everybody called them.
Okay, to start off Ryland did GREAT on the car ride. We got in Indy got some rest and went swimming later on Wed night.
Thurs was the day for appts. with the Doctor from the Carter Centers and the Nero. Cognitive evluation. Ryland did good and we learn so much more about what he could do. Ryland may not beable to walk but we were told he should beable to learn, the difficult part being since he can't say words or work his hands, it will be harder to know what he knows. Me, Nick and Ryland also got our blood taken for gentic testing. We wanted this for along time but never had the money to do it but all the appts and evuations were free.
Friday was a day full of the Educational sessions about HPE. There was so much to take in.
Saturday they had workshops and Sunday we left.
Ryland loved meeting new people but we were away from home so he was sometimes on the fussy side. We did lots of swimming and he loved that. He did okay with sleeping but again we were away from home.
On the way home we went to South Bend to see Norte Dame and also Chicago. Note: Don't drive through Chicago, go around.
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Sorry I haven't gotten a chance to update. I got our Family website updated but not Rylands yet. If you would like a link to our Family site just email me and I will email you the link back.
Here is a link to our Pictures from the HPE conference: http://www.kodakgallery.com/I.jsp?c=19av8ka4.4tv7zi0o&x=0&y=-dyd9v6&localeid=en_US
You should beable to copy and past. I don't have to many of me, but I was taking most of the pictures. There are plenty with Ryland and his friends, oh and swimming, which we did alot. Other families got some good ones also and I should be getting those uploaded soon.
Off, to OT and PT and CCHS.
Summer
Monday, July 14, 2008 11:31 PM CDT
We made it home. I will update more later. So much to do now that we are home. 6 days worth of laudery for 5 people and unpacking everything. Also getting all the pictures downloaded and uploaded.
Check back later, I should have it all updated by Wed.
Summer
Monday, July 7, 2008 1:41 AM CDT
Ryland did good at therapy on Thursday. Because of the Holiday he didn’t have school or swimming. Since he goes to Adaptive Aquatics and not swim therapy, Ad Aq goes by the school schedule. During PT he got to try out something new. It was a Tumble Form craw thing, it’s used more for kids to keep there hands down and using there hands to move but it worked great in keeping Rylands head up and using his hands to help with it. He was a good sport but after a while you could tell he was getting tired. He also got to try out a new walker but wasn’t to thrilled about it.
We all had a good 4th and Ryland loved the Fireworks but he loves load noises.
I started a new Family Blog. Since this is Rylands site and some seem to think I talk to much about other things I started a Blog so I can talk about our Family, Me, Nick, Nathan, Mitchell and of course Ryland. I will probably talk about my niece also, since she likes to call me, well more or less she gets my brother cell phone and speed dials me but I like to think she’s calling me.lol So if you would like a link to our New Family Blog you can email me and I will email you back the web address. My email is at the bottom of the page. When you email put Family Blog in the subject line.
Summer
Wednesday, June 25, 2008 11:03 PM CDT
Things are going pretty good. We are getting warmer weather but Ryland has done pretty good. Mitchell had a Baseball tournament this last weekend (got 1st place) and the weather was warm but Ryland stayed cool with a ice pack on the back and a spray bottle with cold water, which he loved.
Ryland's therapies are going pretty good, he kind of fell asleep today in swimming and it costing us $20 a session, plus gas, he really needs to being staying awake.lol
He's been a good boy but needs to work on sleeping in his own bed. Lifting him and him sleeping with me is taking a toll on my back. I guess it's just something I will have to get use to, the lifting part, he's not getting any smaller.
We are hoping for a Hospital free Summer but strep is going around and Mitchell ended up with it yesterday. We are good about the germ factor but Mitchell and Nathan both play with Ryland a lot so we will have to keep a close eye on him. With two weeks to go till our trip to the Families for HoPE conference we don't want a Hospital stay getting in the way of our trip.
Speaking of our trip. I found out today that there will be 41 families, 36 HPE kids (3 being over the age of 20) and one family from Peru coming. How cool is that. I can't wait to meet the family that I've only been able to email. There will be some family from the last conference but sad to say that 4 of kiddos we met at the 2006 conference have become Angels.
Please say a little pray that all goes well for us and in two weeks we will be in Indy.
Summer
Tuesday, June 10, 2008 3:58 AM CDT
~Picture is Ryland fishing on Saturday~
Ryland had another good week. I guess it would be nicer if it would stop raining for awhile. We all just been taking it easy since school ended. Rylands been sleeping in when possible and waking up at 5am to get to cuddle with mom. It is so nice to have him healthy and happy.
This past week Ryland had PT and OT on Friday. The electricity wasn’t on when we got up on Friday so Nathan and Mitchell came to Sioux Falls with Ryland and me. It did come back on as we were leaving, never did figure out why it was off.
On Saturday me, the kids and my mom went to a Fishing Derby at Covel Lake. At started at 8:30 but we didn’t get there till 10. The kids all signed up and stated fishing. Ryland got the first couple of fish, Nathan got one but Mitchell never did get one. Ryland caught more fish than anyone. It was so cute he would get mad when you would take his pole away. The funny thing was he know what to do, you would cast his line out, put the pole next to him in the Kid Kart and he would grab the fishing line and pull on it. The morning had perfect weather, not to hot and not to cool. The derby ended at 11:30 and had only caught 3 fish, so we didn’t win anything for that.
The real funny part is next. So here’s how it went, me and the boys went to check the fish in and get some Hot Dogs and something to drink. As we walked over to the picnic area there was a table full of prizes and a couple of Bikes. I wasn’t sure what it was for. We finished eating and Nathan ran back to fish with grandma. Me, Ryland and Mitchell starting walking back when a little girl came up and I said did you get a big fish and win a prize, the mom said no it was a door prize, I said Oh, I didn’t know they had door prizes, the lady said yep, you better go check. So back over to the picnic area we went, as we were walking back Mitchell says, Mom, won’t it be funny if I won the bike, so we get over to the prize area and I said Mitchell go check, then some lady says are you Mitchell, were do you live, Mitchell goes on and gives her his address and she says, You won the bike. Mitchell was in shock and so was I. I could not believe it, how funny the one that didn’t get any fish wins the biggest prize. I did tell him he has to share it with Nathan.
So after fishing till about 3 and getting the bike tided to the top of the Jeep we went to bring grandma home and drop off all the fishing stuff. We headed back to Hartford and got ready for the races at I-90 speedway. I’ve never been to the races in Hartford but they were having a free night for Hartford residents so I figured why not. Me and the boys went, Nick was having a guys night out and he’s not a race person, so I didn’t mind. So at the races Ryland had a blast, he only fussed when he got hungry. He had a smile on his face the whole time. We got home late but we didn’t have anything planned for Sunday so it didn’t matter.
Sunday we didn’t do anything, Ryland watched Nascar, of course but that was about it. Monday Mitchell had a baseball game in Beaver Creek. Now it’s Tuesday and Ryland will start up summer school. He only goes on Tuesday and Thursday, which is nice, not over doing it but he does have to wake up at 8am. Swimming starts back up on Wed. OT and PT on Friday and Nathan and Mitchell have games. We don’t have anything planned for the weekend but we will see, if it’s nice we will have to get out and enjoy it before it gets to Hot out.
Here is a link to Rylands picture on Argusleader.com I forgot to mention that at guy from the Argus came and took picture of the boys, Nathan and Mitchell have one of there also. http://www.argusleader.com/apps/pbcs.dll/gallery?Site=DF&Date=20080607&Category=NEWS&ArtNo=806070801&Ref=PH&Params=Itemnr=3
That’s it for now.
Summer
Tuesday, June 3, 2008 3:06 AM CDT
~Picture is Ryland fishing on Saturday~
We had a great weekend with the CMN events going on. Ryland of course loved all the attention and the motorcycles. It was a little bit warm on Sat. but Ryland did pretty good and only got a little fussy when he got hot. On sat. night went also went to a canaries baseball game, which Ryland loves, more loud noise. Not much else to report. He has OT and PT this week and starts up with summer school and swimming next week. Nathan and Mitchell have baseball still, that will be the whole month of June. Ryland is doing great after Botox also, he's doing more kicking and steping using left and then right. Enjoy the pictures. For CMN Bikes and Babes Ryland had to mark off the bikers cards that came through Hartford, he loved doing that.
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Tuesday, June 3, 2008 3:06 AM CDT
We had a great weekend with the CMN events going on. Ryland of course loved all the attention and the motorcycles. It was a little bit warm on Sat. but Ryland did pretty good and only got a little fussy when he got hot. On sat. night went also went to a canaries baseball game, which Ryland loves, more loud noise. Not much else to report. He has OT and PT this week and starts up with summer school and swimming next week. Nathan and Mitchell have baseball still, that will be the whole month of June. Ryland is doing great after Botox also, he's doing more kicking and steping using left and then right. Enjoy the pictures. For CMN Bikes and Babes Ryland had to mark off the bikers cards that came through Hartford, he loved doing that.
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Friday, May 30, 2008 3:18 AM CDT
I know I haven’t updated in a while. Ryland is doing really good, he’s getting to be such a big boy. I’ll start off with last week. On Sat. we went out to eat and to a movie (Nick had to work) me and the boys. It started off a pretty good day and I though we should go see the new Indiana Jones movie, lots of action, just what Ryland loves. So we went to eat at Applebees but Ryland had a little to much sweets and threw up. He acted like nothing happen but I still felt bad, well I didn’t pack a extra shirt so we made a quick stop at Target to get a shirt. I didn’t want to have to have him smelling like throw up all night long. Got the shirt changed and off to the movie. It’s been a while since we have went to a movie and I couldn’t believe the prices, WOW, $45 went pretty fast and we didn’t even get many treats. We sat down and I could tell Ryland wanted the movie to start NOW, he gave me his mom you better do something now or I will, so I got out the Gerber Puffs and he was happy till the movie started. Ryland loved the movie, all the loud noises he would jump but give a big smile. The movie was over 2 hours long and he sat in his chair just staring at the screen. You aren’t going to find to many 4 years olds that will be that good for that long.
Not much happen during the rest of the weekend. On Tuesday Ryland had his field trip to the Zoo, what a bad day. Cold, Wet and Raining and we had to be outside. Ryland usually does okay with cooler weather but it was just a little to cool. We got to see most of the animals and also rode the carousel, which he loved because we were going in circles. By the end of the Zoo Ryland started breathing funny and it got me very worried, he started to really struggle so I got out his nebulizer. After about 15 mins he was doing better and we were inside by then. He was good the rest of the day.
Now that Baseball started we will be busy 3-4 nights a week with that. Nathan’s playing but they have so many kids on his team that some don’t get to play, one of them is Nathan. I don’t know if it’s just because I am his mom but he’s a good player but for some reason the kids that play the most are the ones who’s dads are the coaches, who are helping out all the time or are really good friends with the coaches kids. If I would have know that I had to pay $80 for Nathan to sit all game I would have maybe put him in a different baseball league but it’s to late now. As for Mitchell he’s doing good but he got lucky and only has 11 kids on his team unlike the 20 something that Nathan has on his team. Of course Nathan doesn’t say anything cause he’s not the type of kid that complains, he such a easy going kid. One more thing about baseball Sioux Falls has a Miracle team, it’s ball for kids with special needs, so next year Ryland we be able to play, which makes me cry just thinking that all my boys can play ball. Can you image how busy I will be having to get to all those game.lol
On Wed. Ryland got Botox in his legs. He did soooo good, he fussed alittle but had no tears, I had to hold back mine though. It’s so hard to see him go thought that but I know it will help and it already has. It’s amazing how fast that stuff works. Daddy was able to come along to help and Ryland just cuddled daddy when it was done. It also worked out great to get the Botox now since he doesn’t have swimming for a couple weeks. He still has PT and OT. I can’t wait to see what he does in PT.
Thursday was Ryland last day of school, he does started summer school up in a couple weeks. For those of you who may not know Ryland is not a morning kid and summer school is in the morning. He likes to wake up on his own and when he doesn’t he is not to happy about it. I guess that a 4 year old for ya.
On Saturday Ryland gets to be the CMN kid for Hartford. They have a poker run for CMN and they are coming through Hartford and the bikers have to get there cards punched by Ryland. I love doing this kinds of stuff because you always have people asking about what Ryland has, so it puts more awareness out there that most people had know clue about. Since Ryland loves load noises he is going to love to hear the bikes roaring by. We also get to go to a Canaries Baseball game that night also, what a prefect day for Ryland, he gets to do stuff he loves all day.
I will put some new pics up when I get a chance. I’ve just been so busy with everything which also includes my Ebay stuff. I’ve been doing pretty good with that but it does take time to make new bibs and burp cloths. You can always search Rylands HoPE Boutique and something should come up. Maybe after baseball is done and we get back from the Families For HoPE conference I’ll start up a website. That’s all for now. The new pic on is Ryland in the tire swing during thearpy, he loves it.
Summer
Tuesday, May 6, 2008 9:29 PM CDT
Not much new going on. We finally got some nice weather so we got outside. On Saturday Ryland got a little tan, he sat outside with Grandma Suzi and played with worms. Me, Nathan and Mitchell went to a couple rummage sales, found a couple good deals. I wasnt' going to go, not a rummage person but the kids wanted to go.
Mitchell also got signed up for Football(by by $90 dollars) he is selling raffle tickets that help with the cost of football they are $3 a piece, let me know if you would like to buy maybe a couple.
We got a bike trailer, it's used but got it cleaned and it works good. Just had to mess with a couple things but Ryland was able to sit in the trailer nicely. We did some riding around on Sunday and Monday. It's nice that Ryland can do something that any other 4 year old can do.
With nice weather the kids Baseball starts, school will be ending and all of Ryland's Thearpy appts will need to be worked out. Still selling stuff on Ebay, my bibs and baby items seem to be selling better, you can seach them, just put Rylands HoPE Boutique into the web search.
That's about it for now. Ryland is doing good so what else is there to say.
Summer
Sunday, April 27, 2008 5:39 PM CDT
I like to post stories and poems every once in awhile, here's a good one.
Lori Borgman is a newspaper columnist and author. You can find her at: www.loriborgman.com
SOME MOTHERS GET BABIES WITH SOMETHING MORE...
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.
Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every
mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.
Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs
and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such
thing as a perfect body. Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor
tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the raise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even
wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me!
I've got what it takes."
You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a
disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
You're a wonder.
Lori Borgman is a newspaper columnist and author
Tuesday, April 22, 2008 7:49 PM CDT
Ryland has had a good couple weeks. I think he’s happy with having Nice weather finally. Last week his preschool went to the Butterfly House in Sioux Falls. He had fun to start off but I could tell that the warm room was getting to him, glad he’s not a butterfly. If you don’t know the butterflies at the Butterfly house like it at 80 or above, which Ryland is better at 80 and below. I did get some great pictures. I try to go with him when to school goes places since he really needs one on one care.
Later in the week Ryland had a couple appts. And we had a couple hours in between so we headed to Falls Park in Sioux Falls. It was a little windy but we had fun walking around and getting some pictures.
Friday was another busy day with appointments. They all went great and Ryland did a good job for having to run around all day with mom. I figured it out the other day how many times I had to take his Kid Kart in and out of the Jeep last week. It came to 19 times, that includes doc. Appts, school and going into stores. This has no relevant just shows how busy we were.
This past Sunday was Nathan’s 13th Birthday, it is hard to believe that my first born is 13. I hope he had a good birthday but Nathan is a quiet kid, he didn’t want much just money. We went out to eat at Famous Dave’s. Going out is a big thing for us since we only do it when it’s someone’s birthday or we have a little extra $$. Ryland had fun, we let him chew on the rib bones, it was funny. I got lots of pictures of him eating. We also went bowling after we ate and I won. Nathan and my brother Danny did okay but Mitchell kept throwing gutter balls so he stopped trying .
Ryland all in all is doing good. Some falling asleep problems every once in a while but much better than before. He’s been eating more Gerber snack foods. He is also still eating Oreo Cakesters, which he loves and makes a nice mess. It is great to have him like this. Just a Happy kid. We went shopping a couple times last week and he did so good, much better than a lot of other little kids we saw in the stores. We went to Gymboree and the ladies know him, always say Hi and are always so very helpful.
I haven’t worked for a month now, don’t know why but as long as I am selling my bibs and other stuff on Ebay it helps. I found out if you put Rylands HoPE Boutique in yahoo search my stuff comes up, as long as I put Rylands HoPE Boutique in the subject line when I am sell them. It is kind of good I haven’t worked since we have been busy with appts. I will add new pictures asap.
I do have some sad news to report. Taylor 4 1/2 month old sister to Kai (alobor HPE) passed away in her sleep. She did not have any health problems so it’s been a shock to all. Tonya, Kai & Taylor's mom, has been a friend of mine now for about a year.
Hug your kids a little tighter tonight.
Summer
Thursday, April 10, 2008 2:17 AM CDT
I thought I better update and since Ryland decided to wake up at 1am and is not looking like his going back to sleep anytime soon, oh what the heck I'll update. I have been trying to get him back to sleep but no luck.
Ryland is doing wonderful. Eating good and is pretty much in a good mood most of the time. I love it when he's like this. He has been throwing his little fits but I don't mind he's just expressing himself, it's probably not good but I laugh when he does it, it's just to funny. I look at it this way, I'm very lucky to have a child that can express when something is wrong.
All his therapies have been going good. Swimming is the same, he loves it. We are finally going to get the PT evaluation done so we can get that started, since school is almost to a end again he really needs his PT, OT and ST during the summer. The only thing I am worried about is gas prices, our Jeep is bad on gas and if we are making 3-4 trips to Sioux Falls for therapies and doctor appts it's going to add up fast.
We had a good couple of weeks. Well, besides me (mom) getting pneumonia and it hanging around for 2 weeks. My sister in law, Misty and my niece Makayla came from NC. It was great to see her, I only got to see her a couple days while they were hear but I did get to see her. Misty got sick and then Makayla got sick to and it messed up everything they had planned. She had her 1st Birthday party at Gigglebees and we all had fun. I made her Birthday dress and it turned out cute but Makayla is just a little peanut so it was a little big on her. Ryland loves little kids and Makayla was so good with him.
As far as everyone else, Mitchell is done with Wrestling, he finished out the season with 6th place in regions. Nathan will be 13 on April 20. I should planned something but I had planned on working more at Kohl's to have money for his birthday but I haven't worked there for a month. Both the boys will be starting Baseball there real soon but there games are usually on weekdays so weekends are open. I am HoPEing for to get a cooling vest for Ryland for those warmer game days but the vest doesn't come cheap, they are about $300 that's with a extra ice packs. The ice pack things are a special type of liquid, so they cost a little bit more the reg. ice packs.
I am still praying and HoPEing for something to come through as far as a minivan goes. The Jeep just keeps getting smaller and smaller, just kidding, I meant to say the kids just keep getting bigger and bigger. For example, if you sit in the front passenger seat you have to be shorter and smaller since the seat has to be pulled forward for Rylands feet and legs to fit in the backseat. It's almost impossible to fit the three boys in the back seat.
I'm almost back to 100ealth. Nick did get something, he thinks it's from work since his symptoms are different than mine. Like I said before I haven't worked in the last month but Nick's been busy and Citibank and Wal-Mart. I'm still selling stuff on Ebay and that has helped a little, it's not much but any little bit helps.
Ryland is starting to look sleepy so maybe we wouldn't be up all night and he can go to school, he did this 2 weeks ago but missed school. One more thing we got the final info for the Families For HoPE Conference, it's going to be in July in Indianapolis, can't wait.
Summer
Tuesday, March 25, 2008 11:59 AM CDT
We did make it home the other day, right it time for Easter. Which I thought was going to be good, well I got sick Saturday. I'm thinkin I got what Ryland had, that was awful, so needless to say I didn't enjoy Easter, that much. I was able to get some the Easter stuff done. I usally fill eggs up for the kids but this year I just put all of the candy in a bowl, I did hide 12 eggs around the house for Nathan and Mitchell to find, they had money in them.
It was nice to be home but being gone for 5 days not much gets done. I had lots of laudry and cleaning to do, but all that had to wait till I got better. My mom and brother came over for Easter and my mom helped with cooking and so cleaning, I didn't want to be around food.
Ryland is back to his happy self. He's getting some good sleep in also, which is nice as he didn't sleep very much at the Hospital. He's starting back at school today. Now we just need to get back to our normal stuff. It's looking like he didn't loose to much weight during this illness.
The only thing we have going on this coming week is my sister in law Misty and my niece are flighing in on Wed. I can't wait. They will be there for 9 days and she is having her 1st Birthday party at Gigglebee's next weekend. Only wish my brother could be there but since he works for a Nascar team he doesn't have time off from Jan to Nov. I talk to him aleast twice a week so that helps.
Lets see Mitchell is almost done with Wrestling. Baseball will start in a month. So, yipee a couple weeks off of sports stuff. I missed work all last week, but didn't get fired, thank god, I only work one day this week, so it should be easy going.
That's about it. The snow is gone and the somewhat warm sunlight feels sooooo good, good bye Winter, HELLO Spring!!
Summer
Thursday, March 20, 2008 1:05 PM CDT
We are still in the Hosptial. They want Ryland eating before he is able to leave. They gave him to many fluids and his sodium dropped down way to far and we can't do much but wait till he throws up some fluids or pee's it out.AGH He didn't sleep very well the last couple nights. Yesterday he cried/screamed for over 2 hours after I said that the Miralax is going to make him crabby, poor thing cried and cried and there was nothing I could do.
Daddy's up watching him now but he's got to go back to work. Hopefully we will be out tomorrow. He's in Room 1254 at Sanford Hospital. 605-328-1254
Summer
HAPPY BIRTHDAY to my Niece MaKayla, she's ONE today!!
Tuesday, March 18, 2008 11:29 PM CDT
Ryland is in the Hospital but is doing much better after getting some fluids in him. It should just be a overnight stay. Will update more later, gotta get back to the room.
Summer
Monday, March 3, 2008 12:20 AM CST
To start off we had a fun weekend. We went to Brookings, SD for a State a thon for Children’s Miracle Network, they had it at SDSU. The kids always have fun and Ryland is always the center of attention. He loves when people are talking to him. It’s great to see so many collage kids doing this for CMN. He was a little on the grumpy side but I have to wake him up and he didn’t like that. We stayed at a Hotel and got some swimming in also. Got home on Sunday with plenty of time before the Nascar race started. Yep, Ryland still loves his car racing.lol Rylands uncle (my brother Willy) still works for a Nascar team in the Cup series it #34 & #37 and for the Nathionwide series it's #24
Ryland’s been pretty healthy, (knock on wood). Schools been good and all his therapy have been going good. He’s been doing OT at CCHS on Fridays and they have worked with his gagging. We’ve worked on it at home also and it must be working because the other day he ate 10 cheerios, on number 11 he gagged. Sleeping has been good, as long as he gets his meds and you don’t wake him up before he wants to be woken up. This has been the best winter health wise since he was born, weather wise that’s a different story.
Speaking of weather, hopefully this Summer we will have a cooling vest for him. They cost about $300 with extra cooling packet costing $60. Last year we seemed to be inside all the time, with it being so warm out. I really want to be outside more.
As far as everyone else, Mitchell is in Wrestling still, Nathan’s not in anything till Baseball starts. As for me I’ve been working one day a week for 4 hours, that’s at the job I get paid at. Even though it is only 4 hours a week I get to be around adults. I’ve been selling stuff on Ebay to make up for not getting any hours. I still am making my bibs and burp cloths. My eBay seller ID is rylandsmom350. Nick is still at his jobs.
My sister-in-law, Misty and my niece MaKayla will be visiting at the end of March, I can't wait, Ryland and Makayla had so much fun together at Christmas.
Keep us in your prays, that everyone stays healthy and we can have a Great Spring. I’ll put some pics up when I get a chance
Summer
Thursday, February 7, 2008 12:10 AM CST
What a busy last month. Ryland has had lots of doctor appts. I guess to start off he hasn’t gained enough weight so they put him on more ducal, that adds more calories to his bottles. If he would just stop getting taller we would be okay in the weight department. He now is somewhere in between 39-40 inches, and has some long legs. His sodium was also off a little so they put his DDAVP up to 1 tab in the morning. I have to make a appt. to get that checked again. It’s not so hard doing sodium checks since he has a Port-a-Cath, he doesn’t really react to getting poked. He’s such a strong little guy.
He still swimming on Wed. and loving it, he was a goofball all day yesterday so at swimming he was really ready to go. A couple weeks ago we started OT at CCHS, he’s still wondering about that. Robin the OT is working on a lot of mouth stuff to help with his gag reflex. We are hoping to get him to eat more thicker stuff of more solids. We are going to add PT but have to do the evaluation for it, just have to fit it into my schedule.
I haven’t been working much but that’s good with all of Rylands stuff and Mitchell’s wrestling meets. Mitchell has had wrestling every weekend. A couple weeks ago we didn’t get home till 12:45 am because the meet went so long. Mitchell now had a 2nd place, couple 3rd and coule 4th places. He's not doing to bad, some kids he wrestling have been wrestling since they were 4, this is Mitchell 2nd year. We have 4 more meets than his done. After that Soccer starts.
Nathan isn't in any sports but did get a honorable mention for his Scince Fair project. He did a Hovercraft thing with a CD, water cap and a balloon, it was pretty cool. He's still my little helper, well not really little just my helper I guess you could say.
Speaking of not so little. The other day I had Ryland standing up pretty good and had him stand by Nathan and Mitchell, they couldn't believe how tall he was.
Well Ryland needs to get to school, he goes at 12:45. We have Mitchell wrestling Friday and Sunday. Also CCHS Mallwalk on Saturday. Citibank has a skiing thing at Great Bear on Saturday, not sure if we are going, the cost of skiing is discounted but the cost is still alittle high.
The new picture is of Ryland sitting on my legs. He saw the camera and had to smile, he loves the camera.
I do have some sad news to report, another one of Ryland HPE friends passed away, Cayden Arnold (4 yrs old)from NC went to join the angels in heaven on Friday. We met him and his family in 2006 at the HPE family weekend. We were going to meet up with them when we went to NC in April 2007 but everyone was sick so we figured next time. His mom is one the the board member for Famlies For HoPE. Please keep them in your prayers, his passing was so unexpected.
Summer
Tuesday, January 15, 2008 6:54 PM CST
Not to much new going on. Ryland is doing good, he had a little of a pink eye the other day but started on meds right away and it is fine now. The new picture is Ryland bowling, he had a BLAST. He loved the ball rolling and the noise. We've done lots of the past couple weeks. Sledding, bowling, Ice Skating, a movie and wrestling matches.
Ryland starts more threapy this week at CCHS. So now we have two normal trips to Sioux Falls on top of the doctor appts he has. All this traveling really makes me wanting a minivan not just for more room but better gas mileage. I figured it out the other day one trip to SF uses 2.5-3.5 gallons of gas, that's with alittle running around also. The more room thing is because the car we have is a Jeep and doesn't have lots of room and the kids aren't getting any smaller. Rylands feet hit the front seat and if the seat is all the way forward no one can really sit in the front seat. My mom keeps telling me something will come up and things will work out.
Mitchell is wrestling. It's very interesting sport, ya I don't know anything about it. Matches are all over the place and last long, which Ryland doesn't always like. The other day we had to strip him down because he got way to hot.
Nathan decided not to do any sports, which I don't mind but I feel he decided not to because he knows how much harder it is on me to do the traveling and come up with money. He won't tell me why and since he's not a talker I try not to push it.
I've cut back at work or I should say they don't have many hours to give. I like being home more. Gives me more time to play with Ryland and be awake. I also have more time for sewing. The best thing is to wake up to Rylands smiling face and our thing now is I sing "You are my Sunshine" to him, it's a must, he knows it's our thing.
Oh, sleeping, he has his bad days and good days. If I get at least 2 nights of 6 hours of sleep I'm good to go.
~ONE MORE THING~ We are doing the CCHS Mallwalk if you would like to donate email me and let me know by Feb 4th. rylandsmom350@yahoo.com
Summer mom to Happy Ryland
UPDATE: Get our Pictures back from Disney photopass so I'll be putting new ones up
Tuesday, January 8, 2008 11:58 AM CST
We got some sad news today that one of our close HPE friends passed away last night. Sammy Harley of Indianapolis, Indiana was 4 years old and one of Ryland's buddies. Sammy's mom Leslie has been there for me through so much. From the very beginning of finding out about Ryland HPE she was the first to come and help me understand things better. Leslie started Families for HoPE, and has done so much for so many families. Sammy will be missed by so many but I do take comfort in knowing that he is in heaven, free from pain and watching over this special friends. ~High Five Sammy! We will miss you.
With HoPE, Summer
Picture is of Ryland and Sammy at the Families for HoPE weekend in 2006.
Monday, December 31, 2007 10:06 PM CST
As the new year approaches I look back at what a good year we have had. Yes we may have spent all of Feb in the Hospital and ended up sick during our vacation in NC but there are so many things to be thankful for, here are just a few things. It’s been 10 months since any long hospital stays. We started off the cold season having to neb treatments but Ryland got better and he’s been healthy most of Nov and Dec. He’s been wanting to do more and is getting so big. Not to mention our Make A Wish trip, that will forever be in our memories.
Just a few New Years resolutions for Ryland would be better sleep and staying healthy. Yes he did good on his new meds for a couple weeks and then he was back to wanting to sleep with someone. I don’t know what it is but he knows when someone isn’t next to him. So needless to say I haven’t had much sleep the last two weeks since I’ve had to work at 6am. I will complain but I am very thankful that he is hear to wake up to. I am cutting back at work because Ryland is much more important than the little extra money I make working.
Now as far as Christmas goes it went GREAT. It was so nice to see my brother, sister in law Misty and niece Makayla. We did Christmas on the Sunday before Christmas so everyone in my family was able to make it. The weather was great but a little cold, so no outside playing. Makayla did wonderful with Ryland. I was so surprised how she was with him. She’s gets around everywhere, is so lovable and will go to anyone. We really didn’t do a whole lot on Christmas Eve (did some shopping) or Christmas Day. Santa did come on Christmas day. The kids got most of what they wanted. Nathan new bike, Mitchell MP3 player and Ryland got a toy he can play on the computer.
We also went sledding at Tuthill. It’s a big hill in Sioux Falls. My brothers, Misty, her sister, my mom, Makayla and the boys were all there. Ryland got a new sled for Christmas so we had to try it out. We did go down a couple times but carrying Ryland back up the hill is the hardest part. You won’t believe how hard it is the carry 30 some lbs up a steep hill, I got my workout and so did my brothers. Makayla went sledding down a much smaller hill and love being outside.
Willy, Misty and Makayla left on Friday. It was hard to see them go but hopefully Misty and Makayla will be back for Easter. Willy won’t be since he has his racing. They got a new driver and sponsor this year, they got Hefty Racing (the garbage bag) I guess he won’t have to buy trash bag while they have this sponsor. lol They are mainly going to do the Nationwide series and a couple cup series. Should be interesting, and the boys will love it.
Oh, I almost forgot to mention, Nick’s sister and brother in law had there baby. Little boy Camden Michael born Dec 17 and I guess he looks just like his brother Anthony. I had fun shopping for him and sewing some stuff for him.
Well I will post some pictures of Christmas, sledding and just everyday things soon. I got a good video of me and Ryland sledding. I wish I could have seen his face. He loved it sooo much.
HAPPY NEW YEAR!!!!
Summer
Sunday, December 9, 2007 6:48 PM CST
Everything is going good. Ryland was put on a new med to help him sleep and it is working GREAT! He has slept in his own bed 4 times out of the last 6 nights. Doesn’t seem to have any side effects. He also seems much happier with getting more sleep. Thanks, Dr. Lang.
Ryland went sledding at Grandma Suzi on Saturday. I didn’t plan on him doing much sledding since he doesn’t have snow pants but my mom finagled her old winter coat to work for some snow pants, I was working at the time and didn’t see it but I guess it was pretty funny but Ryland had a blast. He just loves being outside. I it nice to see the snow but not the cold. It’s kind of a pain getting Ryland all bundled up, the coat is the biggest problem. Lets see, Oh, Ryland likes to get the Christmas Tree, get him to close and watch out stuff goes flying. If something is in his reach he will try to go for it. We bought some Moon Sand for his birthday and he loves it but it does make a mess. At the rate he’s going he will be out of it soon, since most of it ends up on the floor and the vacuum gets it. It is so nice to have him happy and healthy.
Nathan and Mitchell are doing good, both are getting good grades in school. Mitchell is going to be in wrestler, Nathan I guess isn’t, it was his first year last year and everyone he competed against had much more experience. Not much new with them.
I’m working 5 days a week but only have maybe 24 hours, I work mostly (6am to 10:30am). It works with our schedule. I get home at 11am and Nick leaves for work.
Christmas is almost here but I still have lots of shopping to do. It’s getting harder and harder to shop for Nathan and Mitchell, they don’t want legos and actions figures anymore and I can’t afford $300 game systems and $150 Ipods. Luckily MP3 players are getting cheaper. Ryland is hard to shop for also, most of the stuff he plays with is switch and special needs toys and they aren’t cheap either. We are looking at a mirror one that lights up and that’s on sale for $90, I just hope he likes it. I guess I could always buy $60 in Moon Sand.lol I’m not to much in a Christmas spirit this year, don’t know what it is.
My one wish for Christmas is for Ryland to stay out of the Hospital all winter long, that would be great. That’s about it. The poem I’m posting is one another HPE mom posted on the HPE yahoo group. I can’t remember but she or someone had sent in to me when we began our journey with Ryland and now more than ever has this poem been so true.
Summer
To You, My Sisters
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you
out every day. I've looked for you on the internet, on playgrounds
and in grocery stores.
I've become an expert at identifying you. You are well worn. You are
stronger than you ever wanted to be. Your words ring experience,
experience you culled with your very heart and soul. You are
compassionate beyond the expectations of this world. You are
my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite
sorority. We are special. Just like any other sorority, we were
chosen to be members. Some of us were invited to join immediately,
some not for months or even years. Some of us even tried to refuse
membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in
obstetrician's offices, in emergency rooms, and during ultrasounds.
We were initiated with somber telephone calls, consultations,
evaluations, blood tests, x-rays, MRI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were
pregnant, or we had just given birth, or we were nursing our newborn,
or we were playing with our toddler. Yes, one minute everything was
fine. Then, whether it happened in an instant, as it often does, or
over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of
children with special needs.
We are united, we sisters, regardless of the diversity of our
children's special needs. Some of our children ungergo chemotherapy.
Some need respirators and ventilators. Some are unable to talk, some
are unable to walk. Some eat through feeding tubes. Some live in a
different world. We do not discriminate against those mothers whose
children's needs are not as "special" as our child's. We have mutual
respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever
materials we could find. We know "the" specialists in the field. We
know "the" neurologists, "the" hospitals, "the" wonder drugs, "the"
treatments. We know "the" tests that need to be done, we know "the"
degenerative and progressive diseases and we hold our breath while
our children are tested for them. Without formal education, we could
become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get
what our children need to survive, and to flourish. We have prevailed
upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children
with cerebral palsy. We have labored to prove to insurance companies
the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could
receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that
means walking away from it. We have tolerated scorn in supermarkets
during "tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have tolerated inane
suggestions and home remedies from well-meaning strangers. We have
tolerated mothers of children without special needs complaining about
chicken pox and ear infections. We have learned that many of our
closest friends can't understand what it's like to be in our
sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To
Holland" and Erma Bombeck's "The Special Mother." We keep them by our
bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically
handicapped children to the neighbors' front doors on Halloween, and
we have found ways to help our deaf children form the words, "trick
or treat." We have accepted that our children with sensory
dysfunction will never wear velvet or lace on Christmas. We have
painted a canvas of lights and a blazing yule log with our words for
our blind children. We have pureed turkey on Thanksgiving. We have
bought white chocolate bunnies for Easter. And all the while, we have
tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how
we'd make it through another day, and gone to bed every evening not
sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in
Italy. We've mourned the fact that our trip to Holland has required
much more baggage than we ever imagined when we first visited the
travel agent. And we've mourned because we left for the airport
without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they
will achieve in life knows no bounds. We dream of them scoring
touchdowns and extra points and home runs.
We visualize them running sprints and marathons. We dream of them
planting vegetable seeds, riding horses and chopping down trees. We
hear their angelic voices singing Christmas carols. We see their
palettes smeared with watercolors, and their fingers flying over
ivory keys in a concert hall. We are amazed at the grace of their
pirouettes. We never, never stop believing in all they will
accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is
hold tight to their little hands as together, we special mothers and
our special children, reach for the stars.
Sunday, November 25, 2007 11:49 AM CST
We all had a great time. We were busy from the beginning to the end. The fight to FL went great and Ryland loved the airplane ride. The first night there we stayed at GKTW and did stuff around there.
The 2nd day we headed out to Disney World and went to Epcot and Magic Kingdom. We got a late start because Ryland was up late the night before and for the whole trip his sleeping was a little messed up. It was great weather the whole trip also. We had a great time and Ryland liked the Nemo Ride. He was able to go on since they had a wheel chair clam for him to sit in.
The 3rd day we had planned on going to Sea World but again got a last start, so instead we went to Disney World again and went to MGM studios and Magic Kingdom. We got to see the Christmas Parade at MGM and Mitchell got picked on, it was pretty funny. Nick got in on video (the older camera style so I can’t put it on the internet) After it got later we headed out to Magic Kingdom since they are open later. Me, Nathan and Mitchell went on one of those log rides where you get wet and guess who got the wettest, Mom. I was soaked and Nathan and Mitchell got away with very little.
The 4th day was Rylands Birthday and we headed to Animal Kingdom first and then MGM after to catch the stunt show. Ryland got lots of attention on his birthday, it could be he had a Mickey Birthday Cake hat. He also had a shirt that say Birthday Boy with Mickey on it. (I put Mickey Mouse on it and Thanks to American Sports in Hartford for embroidering it for me, at no charge) We got back to GKTW early to have cake and ice cream. GKTW got a cake for him and even a little present. Ryland had lots of Cake and ice cream, maybe to much. What better way to celebrate a 4th Birthday.
The 5th day went to Sea World and Universal Studios. At Sea World we got to feed the dolphins, feed some Sting Rays and see the Killer Whale show. Ryland, Daddy and Nathan went as saw the Penguins while me and Mitchell went on a Roller Coaster. It was usually me and Mitchell going on the BIG, Fast rides, Nathan did go on couple. We got to Universal a little later so we didn’t stay for very long but ate supper at Bubba Gump’s.
The 6th day we went to Universal to Island Adventure to check stuff out. The coolest part about Island Adv. was we got to meet the Marvel characters . We had some guy come up to us and asked if we would like to meet them and to be back here in 15 mins to meet them all. So we did and got a picture with them, it was a special meet and greet just for Wish families. Ryland loved that. We went on as many rides as possible but we wanted to see the Ocean so we headed out early.
The last night we spend getting everything packed up. Our villa had a washer and dryer so most of our clothes were clean. Our trip went so fast. Ryland, Nathan and Mitchell were all treated like Kings and all did great on the trip.
The 7th day we woke up early to get everything in the van and head off to the airport early. Since it was Thanksgiving it went pretty fast at the airport and had plenty of time. At the Twin Cities airport we had a Thanksgiving day meal at TGI Fridays, never ate out for Thanksgiving day before. Ryland slept for most of the lay over. It was hard to come from 70 degree weather to it snowing outside. We arrived back in Sioux Falls to a couple Make A Wish people and the gentleman who adopted Ryland’s Wish. It was nice to see all these people took time out of there busy Holiday to see us come home.
Well that was our trip in a very short version. Trust me and could go on and on. I will try to put some pictures up. Me and Nick have a nasty cold so everything is going slow right now.
Summer
Thursday, November 15, 2007 1:39 PM CST
Well, everything is going good. We got most of the bags packed. Just a couple more things to do, gotta get Rylands kidkart fixed today, stuff loose on it, pick up some last min things. Ryland is in a good mood and only has a little stuffy nose and cough which is pretty normal for cold weather.
We got a new camera and I can't wait to use it at Disney World, it's soooooo much better than our old one. We went looking for some new shoes for Ryland and also found some Disney Crocs, super cute. I made up about 7 bibs for our trip, Mickey Mouse, jungle and space one, we are hoping to make it to Kennedy Space center and see the ocean. I also made some Mickey shirts for him and one got Birthday Boy embroidered on it.
Nathan and Mitchell have been packed for the last couple days.lol
I want thank everyone that has helped out while we were getting ready. All the tips, prays and just being there, Thanks. I'll make sure to post LOTS of pics when we get back.
DISNEY WORLD HERE WE COME!!!!!!!!!!!
Summer
Sunday, October 28, 2007 9:16 PM CDT
Okay, I know it's been way, way to long. It's been SOOOO busy around here. Football final got over with Nathan and Mitchell doing good. Mitchell had his Birthday party, that went good but I don't think I will be having another anytime soon.lol I've been working more, which I really don't have time for.
Ryland is swimming twice a week now till his birthday. Tons of appts in Oct and Nov. School is going good, he's now a pro. Been pretty healthy but had a cold which he was not ready for. He got a little backed up last week and was pretty crabby but once he started going we went through lots of diaper and wipes. We went in last week and got his flu shot which worked out great and you couldn't even tell he got a shot. He's such a BIG BOY! All and all things are going good. It's times like this I forget what lies ahead, meaning wintertime, WINTER a bad 6 letter work for lots of HPE kiddos.
I finally opened a Ebay store the name is Rylands HoPE Boutique. Wish it was going better but I'll wait and see and if it doesn't work out, there's nothing lost.
As I was reading posts on a yahoo group that I belong to that is for families that have kids with HPE, I read a post that brings so much HoPE for so many familes. A mom of a young man that over 20 years was told her son would never live, got to celebrate his 21st Birthday. There are other that are just as old or older but this young man reminds so much of Ryland, his smile and the way he is with others.
I will post picture asap. I don't know if I'll post before leaving for our MAW trip, which is Nov 16th. But I'll post when we got back, of course.
Summer
Tuesday, September 4, 2007 1:14 PM CDT
It was the first day of school and even through Ryland didn't go to sleep till almost 3am he was a happy camper at school. Nathan is in 7th grade now and Mitchell is in 4th, still hard to believe there are that old. Mitchell's birthday is Sunday and he will be 10. Everything is different this year since they built new schools. It is nice because Rylands preschool class is big and very roomy.
As far as everything else, Ryland had a appointment at CCHS and we have decided to do Botox in his legs to help out with the tightness. The meds he was taking to help that out made the rest of him so droopy, so hopefully this will work out. They did some adjustments on his Kid Kart, Ryland is hard on it and likes to put stuff out of place. He is getting new braces so now we have to go find some new shoes along with that, fun. I think I might have would some at work (Kohl's) that would work, we'll have to wait and see. Ryland is also getting x-rays of his head tomorrow to make sure the bones look okay and the Botox is next week. Swimming is going good and he soon will be going to adaptive aquatics, so we can use or therapies on some other therapies. He's eating good but still not sleeping good. This last week has been hard, he was up for like 20 hours last Wed-Thurs.
Nathan and Mitchell are doing good. They are both in Football. Mitchell is really good at football, I wish he would put that much effort into his school work. Nathan is in Middle School Football now, and that's different than Jr. Football. He still is my quite kid but I don't mind he helps me out alot. They went swimming yesterday at a local water park (with another family)and got fried, so football for the next couple days isn't going to be fun.
My sister in law and niece came up from NC. We had fun. I miss Makayla already. She is the best baby I have ever met. The plane was over 4 hours late and when they finally did get to Sioux Falls the other passengers on the plane said she was the best passenger on the plane. Ryland got a little jealous but had fun playing with her. That's all for now, enjoy the new pics.
Summer
UPDATE:Tues Sept 11th
Ryland is Sept. Child of HoPE on the Families for HoPE website. www.familiesforhope.com/activities/childofhope.html
Monday, July 23, 2007 4:49 PM CDT
I know it’s been a while since I updated. Ryland is doing really good and has been himself. Last night he fell asleep before 10pm, I was shocked to look down and see him sleeping in my lap. His last week of summer school was last week. Ryland did go to one doctor appt, he is up to 27 lbs. Maybe 28 lbs now, he’s been eating (drinking) really good.
Again we have been busy with Baseball. Friday and Saturday Nathan had state tournaments in Mitchell, SD. Ryland didn’t go on Saturday with us because he would have been way to HOT. Nathan’s team did really good for it being there first year. Mitchell has baseball tournaments this coming weekend in Brandon. Now also Football will be starting soon.
I worked 4 days last week and also been selling my Chenille bibs. I never did get my spring cleaning done, maybe I will have to do Fall cleaning.lol Or just hire a cleaning person, anyone willing to work for free.
The last month we have done a lot, baseball, Hot Harley Nights, Jazzfest, shopping and just havin fun. With the Hot weather we do have to spend a lot inside but we still have fun.
Well I don’t know what else to say. We do have a couple families that need prays, Alec, Emma, Miranda and family, and the families that have lost there special angels. I do have good news to report, a family online who’s little girl has HPE had another little girl at 24 weeks and after many months in the Hospital she was able to come home, so now the whole family is together.
Better go someone is hungry and I have a couple bibs that need to be made.
Summer
Tuesday, June 26, 2007 12:03 AM CDT
It's been a busy couple of weeks, to start it off it was my birthday on the 20th, I got to spend the day with the kids, that's the best present.
Ryland is doing good in Swim Therapy but not at school. He's been a little stinker a couple days and like today he didn't go because he hasn't slept very good the last day and half. He has been really crabby since Sunday night, just crying and fussy. He did have a appt. Monday and he is almost to 28lbs, YIPPEE! They want him to be taking in 46oz a day we keep up with the cal. count. Funny, I am trying to loose weight and it's taking us 2 years now to get him from 22lbs to 28lbs. I am hoping his being crabby is because of the Hot weather and not because he is getting sick.
We went to Wild Water West on Saturday. Ryland had a BLAST and so did everyone else. It was Citibank day so it was free, I like free. We will have to go again some time soon, since Ryland loved it.
Baseball for the boys is almost over, just a couple more weeks.
Nathan did a celebrity football camp a couple weeks ago and Mitchell went to the football clinic, were Marshall Faulk (Rams) and Chad Greenway (Vikings) were there to sign autographs. Ryland got to meet them and they signed his shoes. They both talked to Ryland and he of course talked back.lol
Other than that, I've been working a little and selling my Handmade Chenille bibs and Clothing on EBay. If you are wondering my EBay ID is rylandsmom350. Nick started working at Wal-Mart part-time, he still works at Citibank also but with our Make-A-Wish trip coming up we want to get a new camera and maybe a video camera. One more thing, I talked to my brother and my niece is doing really good, starting to pull hair and trying to sit up. He says she loves to tumble around, is very spoiled and she now has enough clothes(I might have went a little overboard).
Well, I better go someone is in need of a NAP!
Summer
Monday, June 4, 2007 10:28 AM CDT
We had a busy weekend. I volunteered to help out with Children's Miracle Network stuff going on all weekend. Saturday they had the Bikes and Babies event and Sunday was the Broadcast at Sanford Hospital. We had fun and Ryland likes all of the attention. It's also a good time for Nathan and Mitchell to just have Fun.
Ryland will start summer school this week. He will be going on Tues and Thurs, this will mainly be so he still get therapy. He will do this for 8 weeks so we do still have to figure out what we will do for Aug. Swim therapy is going good. He hasn't been as active but we figured it's because right now he is the only kid in the pool, before there was other kids playing, since school is out there isn't any right now. He loves action.
Ryland has a little cold right now, nothing big, just a stuffy nose and a little coughing. It does make drinking his bottles and little harder. I am hoping for some nicer weather, meaning No Rain. All our trees in the yard have leaves so playing in the sand box will be a little easier, now we have shade. We got Rylands test results back from eye test and they came back normal, that not sawing he is seeing normal but his eyes are doing what they should be doing. His brain could be changing what he seeing, with his brain malformation it's hard to tell.
I've been working more these last couple weeks, selling my bibs on Ebay, taking Nathan and Mitchell to baseball games every Mon and Wed and getting all the appts for everyone done. I haven't gotten much house cleaning done, I guess no Spring cleaning this year. I am stilling hoping for a house cleaner.lol
I don't know if I will get much updating done over the summer. But no news is good news. It's my BIG 30 birthday this year, don't have to many plans, as long as I get to spend it with family I will be happy.
Summer
Thursday, May 31, 2007 1:00 AM CDT
I know it's been awhile. It's been soooo busy around here. I also starting selling my Chenille bibs on Ebay, not making lots of money, just having some fun with it. I don't really have time for it but it helps me relax.(my ebay ID is rylandsmom350)
Ryland is doing really good and is up to 27lbs finally. He's eating alot, so now we have added baby food at suppertime, sweet potatoes, of course. He is still not sleeping the greatest but that's nothing new. I am just happy he is finally putting some weight on. We still are having problems with his legs. Nathan and Mitchell are doing good. Well I am off to bed but I will update more later.
Summer
Sunday, April 29, 2007 11:06 PM CDT
Everything is going good. Ryland is over everything and is back to eating all the time. He gets crabby when he hungry and lets you know when he want to eat. He still is having very runny diapers from the antibiotics and we have to watch his diapers very carefully or we end up having to change everything. He did soooo good at Swim Therapy on Thursday. Slept pretty good all week long and didn’t miss any school. Since they upped his dose of Baclofen his legs are better but it makes his trunk and head control a little more loose and floppy. Other than that it has been a very good week.
We went to a Boy Scout meeting Friday night outside and they had some Renaissance people there, they did fighting type stuff. Saturday was a busy day, we went to Mitchell’s soccer game and to the Circus. Ryland was good all day and we never had any problems, beside one very bad diaper. Ryland loved the Circus and had LOTS of FUN. I didn’t think he would enjoy it so much but they had lots of Lights which he loves. We got there early to make sure we got a good spot and people kept walking by with light up toys, asking people if they wanted to buy one. Well after about 5 different people walking buy Ryland wasn’t going to have this anymore, he wanted one. So we went to the stand where they were selling them to check out all the different toys. Well we went with the one that cost the most but it’s a spinning light that you don’t have to hold a button to stay, very cool. Found out also that Ryland likes cotton candy, yep you heard me right. I didn’t think he would like it but he LOVED it, so he was on a sugar high all night. I was holding him and he won’t stop kicking, it was so funny, I could barely hold on to him. He did sleep good Saturday night.
It was nice out today so we went out and tried out Ryland’s new sand box. He didn’t like it at first but once Nathan and Mitchell starting putting sand on the hands and feet he cheered up. We all had fun playing in the sand. I of course took video and pictures, this is Ryland’s first sand box. Ryland also swung and went for a walk today.
Right now isn’t to bad but in a couple of weeks we will have school stuff, soccer still going, baseball starting up, all the stuff that goes with school ending and Summertime stuff starting up. I plan on working morning still at Kohls, it’s only 4.5 hours a day but I don’t miss much, since I get up at 5am. I will hopefully be working Wed. for 8 hours since Nick has Wed. off. Nick is working 4 10 hour days now and has Wed., Sat and Sundays off. It’s nice so he can start taking Ryland to more appts, stuff like that.
As for Nathan and Mitchell everything is good, they never got sick, so that was good. Nathan’s birthday went good and we had a blast. Can’t believe his 12 now. After the boys last report card I made the mistake in telling Nathan if he got A’s in stuff like Math, English and Science I would give him $25 for every A, well he is doing good and I am going to be out of $100. Mitchell’s is the same but to make it a little easier, I told him if he goes up a grade he will get $15.
Well that’s about it. I will be putting up pictures and videos.
Summer
Friday, April 20, 2007 11:42 AM CDT
Okay, I know it’s been awhile since I updated. A lot has happen and our vacation to NC didn’t go as planned. We left about 6 Thursday night and everything was looking pretty good, the next 32 hours (how long it took us to get to NC) was the big change. I started getting sick on Friday as we were traveling at first I thought it was just my allergies but later Friday night I knew it wasn’t.
Well we stopped off around 11am Fri. in St. Louis to visit Elizabeth and family (another HPE friend). It was a nice break and nice to visit with them. I wasn’t doing to bad and the kids where doing really good. I was surprised they did so well so far. At about 6-7pm I started running a fever and I knew something was up, you know chills and feeling cold and hot. I stuck it out and kept driving thinking we would have know problems and make it to NC by Friday night around 11 or midnight. Guess what, snow changed that. We were about 3-4 hours away when in the mountains between TN and NC it started coming down, A LOT. We made it to the rest area and parked for a couple hours hoping it would be better by 4am. We started off about 4am but it was still snowing a lot. Snow, no plows and curvy mountain roads, ya, they don’t mix. I can drive in SD in the winter but I know the roads. Well after driving 10-20 miles a hour for what seemed like forever the sun came up and we were close to getting out the mountains. One other thing, you won’t believe the semi trucks that went flying past us, scary.
We called my brother to come and meet us. We finally got to his place early on Sat. It was so nice to be there and to get a shower in. Ryland this whole time hadn’t sleep more than 8 hours, you know he didn’t want to miss anything. Since Easter was the next day we had to run to get some food and Easter stuff. At Wal-Mart I was coughing and felt like I was going to get sick, I didn’t but I did later in the middle of the night. I was so sick I didn’t get out of bed on Easter. I didn’t even eat all day and only had a gatorade. Ryland was still doing good and having a blast playing with his uncle and staring at his new cousin.
Monday wasn’t to bad and on Tuesday we had to go do laundry since Nathan and Mitchell where playing in the lake and mud, hum boys. Well me and Ryland started the laundry and my brother Willy went and took the boys to a fishing spot with my mom. Not even 2 mins after they left Ryland threw up all over everything, clothes, kid kart and the tray. I got lucky and got the DVD player just in time. Of course I only had one bib and no clothes for him. Thank god for cell phones and I got a hold of my sister in law and she was just leaving so she grabbed him clothes. I didn’t think it was anything but when he didn’t want to eat later that night I knew something was up.
Well on Wed. I ended up taking he to Carolinas Children’s Hospital in Charlotte. That was only after calling Ryland’s doctors, the Hospital here and trying to figure out were to take him. I got lucky because I called the peds floor at Sanford Children’s Hospital and got a hold of a nurse that knows Ryland and she knew a Doctor that lived in the NC area and called and asked him were we should take him. She called me back in 30 mins. It’s bad that Ryland has to be in the hospital but nice that the nurses and doctors don’t forget him. Well we went to the ER, after a crash course in finding the Hospital, they started a IV in his Port and got some fluids going. After a couple hours he seemed better and I didn’t think we needed to stay a night in the Hospital. The doctors listened to me and what I thought was best for Ryland. During this whole time I am still coughing and running a fever.
I guess to make this short I will rap it up. We ended up leaving Friday from my brothers, still not feeling to good but we were both eating. We had to cancel all of our plans. It rained almost all the way back to SD. They stuff we had on top of the Jeep was wet (mainly clothes). Got home Saturday. I thought I was better but Sunday it started again. By Tuesday I couldn’t handle it anymore and me and Ryland went to the doctor. Ryland didn’t sound to bad but had a ear infection in one ear. He was eating okay taking Pedialyte and his soy drink. I ended up with Bronchitis, sinuses infection and still was running a fever after taking meds for fever reducer. Ryland was put on a antibiotic and mom was put on a antibiotic and a cough med with codeine.
Ryland is almost back to normal, just not eating enough yet. I am feeling good enough to finally update. I can eat again and haven’t had a fever all day. I was praying I would feel better since today is Nathan’s 12th Birthday. He wants to go to a movie and maybe out to eat. Nothing to big, he is growing out of the parties and kid stuff. I wish I could do more for him, since he is a Big help to me but money doesn’t grow on trees.lol Till next time. I will add picture of our trip.
Summer
Wednesday, March 21, 2007 7:23 PM CDT
Not to much new to report. Ryland's cold is better. He's been a pretty Happy little boy, as long as he doesn't get hungry, watch OUT! We went to the St. Patty's day parade, Ryland was okay, he wasn't to thrilled with it. I think he had more fun on Sunday watching Nascar at Grandma Suzi place. He doesn't have any appts. coming up that are anything big. I am just happy that it is getting nicer out. I try to get Ryland out of the house as much as possible.
Nathan and Mitchell are enjoying the weather. Soccer and Baseball will be starting soon so again, HERE WE GO. I will be working more once Nick gets done training at Citibank. Pray that I don't go insane because me mom will be going to NC to help take care of my niece. OH, my brother and his wife are new parents. MaKayla Marie Baker arrived via c-section after 14 hours of labor and 2 hours of pushing on March 20th, I think she wanted to wait till her due date which was today.lol She was 7lbs 1oz and 21inches long. I haven't seen a picture yet but I can't wait. This is a big thing for my brother. He is going to be a great dad. For the insane part, my mom is my only respite care provider right now. So if I do shopping in Sioux Falls she watches Ryland for me.
Well that's about it for now. We can't wait for our vacation. We are going to go see my brother in NC. It will be a little stressful, since it will be me and 3 kids, on a 23-27 hour car trip. Till next time.
Summer
Monday, March 12, 2007 9:55 AM CDT
Not much new to report. Ryland is doing GREAT. He is eating good and doesn't have even a sniffle. Now with sleeping he still is not on any type of schedule. He is hungry all the time and gets very upset when he wants he bottle.
School is going good, although he did miss a couple days last week. I worked Mon-Thur at 6am so daddy had to get him up and that didn't always go smoothly. I think Ryland just isn't use to anyone else getting him ready. Ryland didn't get to do swim therapy on Thursday because the pool was closed but Kate did work with him and Ryland got to ride a tricycle. It was so cute I wish I would have had my camera. Not much else to report but I guess no news is good news.
We are still planning on going to NC in April to visit my brother Willy and his wife Misty. Misty's due date is March 21st. Willy works for Nascar and is gone a lot, I hope the baby comes on her due date to make things a little easier on them. I am getting excited to see them and I know they can't wait for us to come. This won't be Ryland's first long trip, we went to NC when he was 4 months old and IN last year. Hopefully we can get a new DVD player before we go. Ryland broke his other one.
Well, I will update if anything new happens. We are planning on going to the St. Patty's day parade this Saturday, Ryland has all of his green stuff ready. The weather is looking like it will be nice all week, so we might get some walking in also.
Summer
Update Tuesday March 13th: Ryland has a very running nose now and was very fussy in school today.
Wednesday, February 28, 2007 11:32 AM CST
Ryland is back to himself. Happy and eating really well. His rash is finally gone. One little problem is getting him back to a sleep schedule. He kind of is off on the sleeping again. There were days when he might have maybe one or two bad night of sleeping now it seems like it every night and for that reason he hasn’t gone to school. Like last night it was after 1am before he fell asleep and if I had to get him up for school at 7:30, he wouldn’t have enough sleep. I don’t mind having him at home with me, I love lounging around with him. Right now I am typing and he is watching the snow falling out side. I am thinking we might have to do some sledding again.
We now have some doctor and dentist appointments to make up. One of them he can’t make up till April, which kind of concerns me but they are seeing if we can get in earlier. When Ryland went for his check from the Hospital he was doing really well, besides to rash, they were thinking it was because to the antibiotics he was on. He is eating really well so there are no concerns about getting his weight back up.
This last weekend we drove up to Brooking and did the Dance Marathon at SDSU for CMN. The weather was not the greatest but the kids had lots of fun. Ryland has many new girlfriends. He loved the loud noises and the dancing. Nathan and Mitchell played with some of the college kids, there wasn’t to many kids there, that were they age. There was so much going on and the DM had lots for us to do and kept up busy. We stayed over night at the Starolight Inn, it had a pool so Ryland got some swimming in. Mitchell got locked in the bathroom at the motel.
There’s the story: I was in the back room of our motel room and I kept hearing this noise like someone was knocking on the door, well I thought Mitchell was still in the other room watching TV, I kept saying Mitchell get the door, Nathan’s at the door, I didn’t that for a couple mins before I figured out Mitchell wasn’t in the other room. Well I thought Mitchell went looking for Nathan and didn’t have the key, well walked out into the other room and hear Mitchell saying mom and knocking on the door, I could hardly hear him (it was one of those big metal doors). He goes mom I am locked in the bathroom. We messed with the door for a couple mins before I called the front desk, they came down and didn’t have any keys that would work, so the guy called the maintenance guy and he said that they would just have to kick the door down. So Mitchell got in the shower and it took a couple kicks before the door open. Mitchell was fine and now he has a good way of remembering our trip.
Nathan and Mitchell are doing good. Not much going on in Wrestling or not much I know of going on. Mitchell has missed boy scouts a lot because wrestling is always during the same time. I missed both conferences for them, while Ryland was sick and in the Hospital. Not much going on with them. They both have been healthy which is good. I just hope it stays that way.
My classes for the It Takes Two To Talk program are almost over and I have learned so much. They are lots of interesting things I have learned and only wish I knew for when Nathan and Mitchell were younger. We are still planning on going to see my brother, sister-in-law and niece (3 weeks till due) in April in NC. I looked at a aerial view of were they live and it looks beautiful, lots of trees and a lake near by.
That’s about it for now. I’ll post some pics from the DM. Also I always have new pictures up at www.dropshots.com/rylandsmom
Summer
Saturday, February 17, 2007 11:45 PM CST
Well we are back home and Ryland is back to himself again. He’s almost back to what he was eating before. He lost almost a pound in the Hospital, so now we need to get that back up. When we left he was down to 25lbs. He slept good last night and went to bed tonight pretty good, actually falling asleep on Mitchell’s lap and then Mitchell also falling asleep. Yes I got a good picture of that.
We have taken it easy and after leaving the Hospital I picked up some movies, so we had stuff to watch on our new TV. Ryland was fascinated by the TV and is loving to watch his cartoons on it. Ryland got to watch a little of the Busch race today, he was excited about that. He’s just been all smiles. It is so nice to have my Ryland back.
As for the Hospital stay they never did figure out what was wrong. They did x-rays, CT scan, ECCO(sp?) and had drawn his blood many times to try to find something out. His fever was not under 100 the first couple days and one day it got up to 104.1, which is high for him since he usually runs cooler than most people. When we left the hospital he was at 96. There was a lot of new nurses for Ryland to flirt with.lol At his worse point be didn’t want anyone touching him and we just couldn’t do anything to help him feel better. He didn’t sleep more than 3 hours the first couple nights and didn’t take any naps. The one nice thing is having his Port-a-cath, it made things so much easier on Ryland. We did have to replace it once during our stay because it the leaking but Ryland only fussed when the tape was being taken off.
I want to Thank all the nurses, doctors, therapist and hospital staff. They have always tried to make our stays as easy as possible.
~I also have some pray requests~
~Please pray for Carrie Griffin family, she was Ryland’s ST a couple times last year and worked with Ryland’s other ST Cory. She passed away Feb 15th and left behide a husband and 3 kids (4, 3 and 5months old) I ran into her all the time in Sioux Falls while shopping.
~Ryland has many HPE friends that are just getting over stuff and some that are still sick. There are also a couple new ones that can use some prays and hopefully soon they will be able to come home with there families.
~Rylands cousins (my brother and his wifes baby) Micheala is due March 21st . Nothing has shown up to be wrong with the baby but they were also told they probably wouldn’t beable have kids. So she is a little miracle for both families.
I am not sure what will be going on next week. We have lots of appts to make up and things I need to catch up on. To make is easier on Ryland, we are going to wait another week before he goes back to school. I don’t think he can take getting sick again. As for Nathan and Mitchell nothing new. I missed there conference last week. Not much with wrestling or boy scouts going on, as far as I know. (which I don’t know) We also did the CCHS MallWalk last Saturday. Ryland was okay during the morning but got worse as the day went on. If I get time I will put some new pics up. Just have to get them off the camera and uploaded and put them on. Keep us in your prays, I don’t think I can handle anymore hospital stays anytime soon and although Ryland likes the nurses I don’t think he would like to be cooped up in a room again soon.
Summer
Thursday, February 15, 2007 2:59 PM CST
Looks like we will be going home tomorrow as long as Ryland keeps eating and tolarating his feeds. He has slept good the last two night and even has napped. His temp is back down to 96 and he is smiling and laughing again. Now he just needs to get home and he will be happier, althought he will miss his nurses. I will update when we get home.
Summer
Sunday, February 11, 2007 12:35 AM CST
We are in the Hospital. Update more later.
Tuesday, February 6, 2007 9:56 AM CST
Well, we are finally home. We were hoping to get out at about 3 but the doctor didn't make his round till 8:30 last night and we didn't get home till after 10pm. Ryland was happy to be home, I guess that's why he didn't sleep last night. He's watching TV right now and playing with his balloon. I would say he's better but not all the way himself yet. We decided to keep him out of school the rest of the week, which is only today and tomorrow since we have teacher conference on Thursday and no school on Friday.
It's nice to be home but I hate coming home to a mess and it is a mess. I was only gone for 3 days but the kids and Nick can sure make a mess. Then if I don't do laundry everyday it adds up.
We have a busy week with parent teacher conferences, It takes 2 To Talk class, swim therapy, working and the CCHS Mallwalk on Saturday (which I haven't been able to get many donations for). Oh, I also most forgot Nathan and Mitchell have a wrestling meet on Thursday in Luverne to. Next week we have more appts and Valentines Day stuff.
One more thing, we are going to Dinsey World in Nov for Ryland's Make A Wish trip. We will being there for his 4th Birthday and it sounds like since it's right before Thanksgiving, to make things earier, we will be traveling on Thanksgiving Day, so we miss the busy airports before and after Thanksgiving. I think it would be cool to celebrate his Birthday there.
Check out new pictures at www.dropshots.com/Rylandsmom
Summer
UPDATE:Feb 7th
Ryland is coughing and is really gaggy. He isn't taking a bottle and is grinding his teeth ALOT. I talked to his doctors nurse to see if we could get some cough meds and something to help him sleep. He's on just Pedilyte right now since his formula is making the gagging worse.
Sunday, February 4, 2007 7:07 AM CST
UPDATE: 4:30 Sun Feb 4th
Ryland is doing better and to me he seems fine. He is keeping down the little fluids he is getting so that is good, still a little fever. I think we will be going home tomorrow, so just a short stay. We got him a balloon so he is very happy. I will update when I know more, I haven't talked to the doctor today yet so I will know more when we talk to him. That's about it. Ryland wants to say one thing, GO COLTS!!!
Well, we are in the Hospital. Ryland woke up with a fever Sat. and just not feeling good. I update when I know more. We did spend 7 hours in the ER before getting a room, that was not fun.
Summer
Monday, January 29, 2007 10:09 AM CST
I will update more a little later. Check out new pictures at www.dropshots.com/Rylandsmom
Ryland is doing good and everyone is healthy again or better then what we were last week.
Summer
Tuesday, January 23, 2007 6:58 PM CST
Ryland is doing about the same, still has a cough but it’s not to bad. He isn’t sleeping the greatest, unless he is sleeping in bed with me, little stinker. It’s funny how Ryland can almost kick me out of bed, he’s only 27lbs and 39 inches long, he also ends up getting the pillow and all the covers. He did miss school today but he didn’t sleep well last night and he was so tired, he slept till 10 today but was a happy camper when he woke up, all smiles. We went sledding on Sunday and Ryland had a blast he only got mad when we stopped. The hardest part was walking back up the hill with him, with coat, boots and snow pants he had to weight at least 35 lbs. I had my mom record us going down the hill but she messed up and didn’t get us recorded going down. I was sick all week and Nick took off Thursday to take Ryland to swim therapy. I never got a flu shot this year just didn’t have time. Other than that not much else has happen with Ryland. School is going okay and in the next couple weeks we have many appointments, so I’ll have more later.
Nathan went skiing for the first time on Saturday. He did really good and was going down the big hill with no problems within a couple hours. While Nathan was skiing I dropped Mitchell and Ryland off at Grandma Suzi place and I went to brunch with some ladies from church. It was good to sit and talk and not have to worry about a million other things going on. Nathan and Mitchell didn’t have wrestling this weekend, they might have but we didn’t go. Mitchell was sick from school Monday so missed boy scouts and wrestling practice, he’s been coughing and complaining of a sore throat but he was either getting over something or starting something the doctor said. Nathan hasn’t even coughed, so I guess he’s lucky he didn’t get what we had.
One more thing, Ryland did have his Port-a-Cath flush and did really good, it took like 5 mins and we were done. Wish I could say that for having to change the tire today, that took me an hour today, yep flat tire on the Jeep, not fun. One good thing, I might have a new job and it would work great with my schedule and it would consist of no driving to Sioux Falls. That’s it for now. I am hoping to have enough time to get some pics of us sleding up, if not you can check them out at www.dropshots.com/rylandsmom
Summer
Monday, January 15, 2007 9:07 PM CST
We have had a good past couple weeks. Ryland went back in last week and everything looked good. But now I am sick and so is Ryland. Not such what we have. Coughing, headache and just no energy. Ryland does sound congested but not to bad. School was 2 hours last so he didn’t go to school today which was good. I don’t know how the night will go, if he wakes up coughing we will have to make a doctors appt. to make sure it’s not going to his lungs. He’s been having crying episodes, where he will just cry and nothing you do will calm him down but they do stop after a couple mins. I wish I knew what it is. He is doing good in swim therapy and we are looking into getting a membership at a new Family Wellness Center, they have a pool and it’s not to far from us but it is $100 a month for family membership, I think it would be worth it. Ryland is having fun playing with all his new toys but misses going outside, he loves when we are leaving to go some place. We also went rolling skating last week. Ryland had sooo much fun.
As for the other two kids. They decided to start in wrestling. I didn’t want to do a winter sport but one of Mitchell friends dad paid for him so I couldn’t leave Nathan out of it. They had there first meet Friday, very different I must say. I don’t know if we will do every wrestling meet because it will be $8 for each of them every time, plus $4 for me to get in. Luckily Mitchell got shoes from someone else now we just need some for Nathan. This whole thing is clueless for me since I never was into wrestling or don’t know much about it. They also have other things going on at the same time, Boy scouts for Mitchell and this Saturday Nathan is going skiing for the first time.
Also Ryland is going to start in a program through the Scottish Rite Children’s Clinic for Speech and Language Disorders called It Takes Two to Talk and that will be once a week for the next 11 weeks. We missed the first week, since we just started and are going tomorrow for a evaluation. Sounds like it will help out not just Ryland but everyone around him.
As for me since Christmas is over I have been only working 6 hours a week at Kohl’s. I do have to say I did do good this year and got all the Christmas stuff down before Feb.lol We have lots of appts coming up in the next month. Ryland has 4, Nathan has 2 and Mitchell doesn’t have any right now. I still need to get into the dentist just don’t have much time for me but I guess that is normal when you have 3 kids.
I am praying that the next time I write it’s telling everyone that we are all healthy and we didn’t have to make any trips to the ER.
The kids are happy that we finally got snow, just wish I could get out and do some sledding with Ryland. Well Ryland is very crabby right now so I better go.
Summer
Tuesday, January 2, 2007 4:12 PM CST
We all had a good Christmas. It was nice to see my brother Willy and his wife Misty. They had a good trip and everyone was happy to see them. Before I get started there was a cute thing that happen. Last Wed we had a baby shower for Misty. Well Willy had to come and pick up Nathan and Mitchell so he could bring them out to my cousin house, we were in Luverne and they live out of town. Willy picked up Ryland to hold him and Ryland was just cuddling him, it was so sweet but the funny part is when Willy went to leave Ryland won’t let him go and he started to cry, my mom tried taking Ryland from him and he would not see of that. I had to come over and get him because Ryland just didn’t want Willy to go. You have to remember Ryland has only seen Willy a couple times but he does talk to him on the phone when he calls. I only wish we would have gotten it on video.
Now for Christmas. Ryland got some new toys from a special needs catalog , Elmo toy box, GI Joe guy, Clothes, PJ‘s, cool new light, Thomas the Train stuff, Transformer and many other things. The clothes are nice since he is going from 3T or 4T in some of his clothes. He is getting so long we need the length but of course the pants are way to big around the waist. He has been eating really good and now some times he will drink 7oz at one sitting. Since he has been drinking so good we are able to offer some baby foods or mashed tators. It was nice that he was able to be healthy for Christmas this year, the past years he has had some kind of a cold. His new thing is he likes to step up the stairs, meaning I hold him while he takes steps going up, it’s a little harder going down.lol
Nathan and Mitchell got a couple new toys, but mostly $$$. I decided that Nathan was old enough for a MP3 player and he loves that. Mitchell really wanted a white board so he got that and markers to go with it. Me and Nick waited to long to go shopping and we couldn’t find a lot of the things we wanted to get for the boys. Nathan and Mitchell bought a remote airplane and some basketball thing but I can’t really say I know what else they bought. They also got clothes but of course I got the wrong ones, or so Mitchell says, he doesn’t like dark colored jeans.lol They have had a fun winter vacation from school, now that they have snow and can slide down the back porch. The day before it snowed I went out and bought Mitchell and new coat (he broke the zipper in his jacket) and Nathan new winter boots (his feet are bigger than mine now). I am glad I did that, I just had a feeling it was going to snow.
I also forgot to mention the boys new pillowcases. They each have one that has there name and a football player on it. My ex sister-in-law Angy and family had them made for the boys and even thought she has no relationship to Ryland she had one made for him also. She has no idea how much that meant to me and also to Nathan and Mitchell. My ex mother-in-law also sent all 3 boys new shirts that match.
As for me I got a couple new clothing things, bath and body work stuff and the best thing I got was a Mixer. My mom and brother got me a mixer, one that I can just throw all the stuff in and let it mix. Willy gave me money but instead of buying myself something, I took Ryland, Nathan and Mitchell to a Skyforce basketball game on Christmas night. I had fun watching Ryland laugh and kick at all the clapping a cheering and Mitchell trying to catch the stuff they were throwing out, he did get a shirt. Nathan sat and watched the game and bought me some cheesy fries. I did get a little something from Angy and went to Old Navy and got a new shirt.
Nick got socks, clothes, videos and many other things. To many to write about, although if you were to ask him his favorite it would be his Babe Ruth jersey. For those of you who don’t know if Ryland would have been a girl her name would have been Ruth, just kidding, but Nick was pushing for it.
We didn’t do anything special for New Year’s Eve, just sat at home and watched TV. I was going to take to kids out during the day and do stuff but just didn’t have the money to. The kids go back to school tomorrow and Ryland will have his Christmas party since he missed it because of the ice on the last day before winter vac. I am hoping for a smooth winter, basically no Hospital stays or trips to the ER at 3am. Knowing my luck it won’t be Ryland but one of the other two. That’s about it. Till next time.
Summer
Wednesday, December 20, 2006 12:31 AM CST
Ryland is doing better. Still is coughing and gagging on whatever is in his lungs or nose. He has had a great week at school and was laughing on Monday as we walked out the door to go. He did Mon and Tues but I guess today he wasn't himself to much. I think he is just tired. I was hoping that he would be tired after our little car ride last night. We went and saw the Christmas light in Crooks again. He just loves them, he could sit there for hours and watch them. When we got home he kind of seemed tired, ya right.
Friday, December 15, 2006 12:10 AM CST Update: Dec. 17th It's been a hard week for our online HPE family, Roddrick, Ava, and Zeke went to be with god this past week. Please keep there families in your prays.
Friday, December 15, 2006 12:10 AM CST Update: Dec. 17th It's been a hard week for our online HPE family, Roddrick, Ava, and Zeke went to be with god this past week. Please keep there families in your prays.
Tuesday, December 5, 2006 9:25 PM CST I know it's been awhile since I updated but with Ryland starting school and me going back to work it's been busy.
Wednesday, November 22, 2006 4:50 AM CST Just wanted to give a quick update on Ryland's birthday. We had FUN! Ryland went swimming for about what seems like 10 hours, it might just have been that many. Nathan and Mitchell had lots of fun also. We had a couple extra people make it to the party and it just made it more fun. We had about 30 or so come and it sure was crowed but Ryland loved all of the attention. When I wasn't looking and trying to get the cake cut Ryland stuck his hand in the cake, little stinker. He did it twice and the second time it was all over everything including his kid kart.
Wednesday, November 15, 2006 5:04 AM CST There isn't to much new to report. Ryland is doing good. We had a Fun Halloween and Ryland got lots of candy. He did eat some suckers and tootsie rolls. Mitchell had about twice as much as Ryland and Nathan, go figure. All his therapies are going good. I wish I could say he has gained weight but not yet just getting longer. He is on a new formula now, Bright Beginnings Soy Pediatric Drink. It has more calories then his other formula and he seems to like the taste. The bad part is the smell and it stains clothing. One good thing about it is he hasn't had to take his Miralax(laxative)since starting it.
Tuesday, October 31, 2006 3:11 AM CST On Saturday I decided since it was so nice me and Ryland would go for a walk. I got his Tomato Seat and put it in the wagon. He loves his wagon. Well our street is kind of ruff, since they lay the tar and rocks on top of it. Not good for roller blading at all. Anyways it's a good 4-5 blocks till the smooth road. We get out into the street and Ryland just starts jabbering away. He did it the whole 4-5 blocks. We turned since we were on our way to the Post Office. As I am walking I started thinking, I wonder what Ryland was saying. He made all kinds of noises but no real words. If someone were to say to me that day I will give you one wish, what will it be? I would have said, to know what it was Ryland was talking about because he sure had a lot to say. *This is what I had posted on my yahoo 360 blog.
Monday, October 9, 2006 11:30 PM CDT Okay I know it's been a while since I updated but I don't even know if anyone even visits Ryland's caringbridge page.
Sunday, September 17, 2006 8:03 PM CDT We had a good weekend. We had our Fear Factory Party on Saturday and got lucky with someone nice weather, no rain. Nathan and Mitchell had about 12 friends over. It was loud and Ryland just loved it. All the kids running around and they all were playing with Ryland. It was so nice for Ryland not to be in the Hospital. Althought Nick was sick and had to go lay down at his parents place. We had a pinata and played our Fear Factory game.
Thursday, September 14, 2006 4:13 AM CDT I know I should update more now that we have a computer but it seems like when I go to update, something happens and I don’t have time. Ryland is doing really good but I hope he doesn’t get the awful cold/flu that I have had. I just haven’t had any energy but did finally get to vacuum without passing out. Tuesday, September 5, 2006 2:05 AM CDT As you can see by the new picture, Ryland finally got his Walker. We got in Friday but since it has been rainy out he finally got to go outside Monday and use it. He just loves it. I put video up on the tripod page, you have to check it out. http://rylandjesse.tripod.com
Tuesday, August 29, 2006 3:52 AM CDT I was going to update Saturday and got busy. It was a hard week last week, as we attended Amaya Faith funeral. She looked just beautiful and peaceful and I know that Ryland has one more angel watching over him. Of course I cried during the whole funeral but it was a so lovely. Ryland started making noise when the music began but he seems to love music. I still keep her family in my prays.
Saturday, August 19, 2006 10:10 PM CDT This week has been really good. Ryland isn't sore and has been a happy little boy. Although he decided to wake up real early two times in the past week, I don't mean like 6am but more like 3am. So we just put in a Wiggles DVD and at about 7am he fell back asleep, well one of the days he did the other he stayed up till 1pm. It's hard for him to have thearpy when he is cranky. We went outside a couple of times but with it being sticky hot out or raining we tend to stay in the house. I am hoping he gets back to a normal sleep schdule again, if he doesn't we might have to get meds to get him back to it.
Saturday, August 12, 2006 2:39 AM CDT Ryland is doing really good. He still is sore but if you don't touch the the area around the Port-A-Cath he fine. He got a ballon when he was in the hospital and it is so funny every morning he is looking for it. I had to put it in the kitchen so he doesn't see it. I think he is starting to figure it out.
Friday, August 4, 2006 1:22 PM CDT Ryland is doing really good and we are on our way home. Clifford the Big Red dog is at the Hospital and going to read some story so we are going to see him. I will put pics up of him and Ryland. He is doing really good besides a little pain but is smiling so that's good. Also he is eating but throat is sore from breathing tube.
Thursday, August 3, 2006 3:13 PM CDT Rylands surgery went okay. Took just a little over a hour. He is not happy right now. He can't fall asleep and has to stay awake. Tried to give him something to drink and he puked up a little. I have a feeling it is going to be a very long day and night. Wednesday, August 2, 2006 9:53 AM CDT Just wanted to update before we leave for the Hospital. Today is going a little better than yesterday. Ryland woke up crying yesterday and cryed all day, except when he took a nap. I don't know what was going on but it was a long day. Tuesday, July 25, 2006 1:24 AM CDT Well it’s been a busy couple of days. On Saturday we ended up going to the Air Show. It was a little warm but Ryland did really good and loved it. I can tell if he is getting to hot because he won’t want to eat. We went in a couple planes but for the most part sat and watched to planes. Nathan sat a watched also but Mitchell was off playing on the inflatable’s. We parked in Handicap but getting out after the air show was a pain, I think it took us 45mins to finally get out on the road.
Tuesday, July 25, 2006 1:24 AM CDT Well it’s been a busy couple of days. On Saturday we ended up going to the Air Show. It was a little warm but Ryland did really good and loved it. I can tell if he is getting to hot because he won’t want to eat. We went in a couple planes but for the most part sat and watched to planes. Nathan sat a watched also but Mitchell was off playing on the inflatable’s. We parked in Handicap but getting out after the air show was a pain, I think it took us 45mins to finally get out on the road. Tuesday, July 18, 2006 3:25 PM CDT I thought I better update and let everyone know what’s been happen.
Friday, July 7, 2006 10:28 AM CDT We got out of the hospital on Wed. Ryland was happy to be home. He hates being stuck in a little room with nothing to see. They figured he had some flu bug.
Tuesday, July 4, 2006 7:14 PM CDT Happy 4th of July!!!
Saturday, July 1, 2006 10:25 PM CDT Rylands in the Hospital.
Wednesday, June 21, 2006 2:11 AM CDT It’s been about two months since my last update on Ryland. Things have been going pretty good. He is up another pound, so that takes him to 25.5 lbs. He is also over 35 inches long. Last week and at the end of May we were having problems with him throwing up. He was having a hard time breathing and gagging a lot. They decided to put him on a antibiotic and by the third day he was doing much better.
Sunday, April 16, 2006 8:37 PM CDT Ryland hearing test went good we won't know the results till next week but getting him all really for it went great. It only to one try for the IV and also he was at 25lbs. Everyone knew he was coming so they wore his CMN shirt with his feet prints on it. Wednesday, April 5, 2006 1:27 PM CDT Ryland is doing great. I think he is even putting on some weight. He is going in next week for a hearing test and also has a appt at CCHS. Ryland is bearing weight on his arms and we are going to look into a crawing for him. He is into 3T clothes now but his feet still are in a 5 1/2.
Monday, March 13, 2006 7:55 PM CST Ryland is doing great this week. Much better then last week we almost made another trip to the Hospital.
Wednesday, March 1, 2006 8:34 PM CST For the past week Ryland has been doing wonderful. He has been eating more and we started him back on babyfood and today had 2-6oz jars he also is taking a bottle alot more. It's like someone turned on a switch and all he wants to do is eat. He now gets very upset if he doesn't have his food NOW. Hopefully this will put on some weight. He is off nubulizer and I haven't had to suction him in over a week. It sure makes things for me a lot easier.
Monday, February 20, 2006 5:01 PM CST Well we are still in the hospital. We were hoping to get out today but no luck but hopfully tomorrow. He is off the IV and drinking Pedialyte. We would have gone home earlier but had some bad diapers. He is pretty happy but I think just wants to go home (I want to also). He can't leave the room and I know he just wants to get out to see different things. He still is at 22lbs 9oz and I hate when he is sick because he'll lose a little weight and then we will have to catch back up. I really was hoping for 25lbs before summer.
Friday, February 17, 2006 11:10 PM CST Well Ryland decided he wanted to visit the nurses again. He had a fever on and off all week but today he started to throw up and had bad diapers. I tryed everything but he was not keeping anything down. The bad part about the whole thing is we hand plans this weekend. We were going to stay in a motel and go swimming all weekend. I was Friday, February 10, 2006 3:18 PM CST Most of you know we got out of the Hospital Sunday Jan 28th. I just haven't had the chance to update his site. He is doing pretty good. Still coughing and stuffy. He also is getting in more teeth and gets pretty crabby when they bother him and nothing seems to be working. We have a suction machine now and I wish we had it a long time ago it works great. Ryland doesn't seem to like it but it helps clear his little nose. We are still having problems with a little pucking ever now and then. Saturday, January 28, 2006 2:54 PM CST Later last night we got a room and after that Ryland was much happier. He was sitting in daddy lap holding his finger watching TV. He had a okay night and I did get a little sleep. They just took him off oxygen to see how he does. He is drinking a bottle right now. Grandma Suzi stopped by so I could get a shower and a little break.
Well he started playing with his bell (Nick got a bell at work, it's metal and makes a really cool chime sound). He loves that thing but when he drops it he get really mad, he'll look at me and give me his sad face, so of course I'll put it back in his hand. Well after doing that about 30 times I decided if we keep going like this he will never get to bed. I started typing to a friend online and Ryland of course had to also, he loves hitting the keys. He finally gave up and fell asleep around 11:20. Nights seem to go like that. Sometimes we read books but he hates to have you stop. Things will stay the same school Mon.- Thurs, swim therapy on Thursday and doctor appts added in-between all of that.
We are really hoping to go with out any Hospital stays coming up in 2007, that would be really nice. You can clean and clean but germs will always be around. Nathan and Mitchell are good about washing there hands and if they have colds not holding Ryland.
I still have some Christmas shopping to do. I know I do this every year and I can never find what I am looking for. Ryland and Mitchell are pretty easy to buy for but since Nathan is getting older, he's not to big into toys as much.
My brother Willy and his wife Misty will be here on Christmas Eve. We are going over to my cousin that day and doing Christmas with them, my aunt, cousin and his family. My cousin has a son, Max and the boys just have a blast playing with him. It funny to think next year, there will be a little girl in with that, 4 boys and one girl. Oh wait, that's how it was for me.lol Nick will be taking Ryland over to his parent place on Christmas day after we get our Santa gifts opened up.
It's hard to believe that 2006 is almost over with. In just 4 months Nathan will be 12 and Mitchell will turn 10 in Sept. We will also be doing our Make A Wish, wish in 2007, hopefully in Nov. I am hoping to make a trip to NC to visit my brother, when the baby is born. They live in SC now but are moving in Jan to NC. While we are out there I hope we can visit with some other HPE families, there are a couple that only live like a hour from Willy. I have met one family from NC, they came to the HPE family weekend in April. Everyone was hoping for another get together but it isn't looking like that will happen in 2007.
As for me, I have had a little cold. I been working about 4 days a week. Nick is still going at it at Citibank, he likes it and it's been nice because he has more time off, like when Ryland was in Peds outpatient last week, he just called and told them what was going on and no problems. He also is working at Sunshine early morning, delivering. Nathan is doing good in school and right now we don't have any sports going on. He got braces in April and besides going broke to pay for them, he does pretty at keeping them up, he better. Mitchell is doing better in school and is still doing the Boy Scout thing and no sports right now. We went to the dentist last month and I was told that Mitchell will have to get braces in the future, hopefully there will be a break in between paying for Nathan's and getting Mitchell.lol They both have talked about getting into wrestling, they aren't much for Basketball.
That's about it. I'll update after Christmas, I am pretty sure I'll have some good stories. Have a very Merry Christmas.
Summer
Boy what a week. Ryland didn't sleep much last weekend but went to school on Monday and I thought okay we are good. Well I was wrong, Monday night his cold got bad and he didn't sleep good. I started Neb. treatments and started using the suction machine so he could breath. I figured if I kept those up we would be go to go. Ryland missed school the rest of the week. I called to get him in on Wed. but there were full, they said I could take him to acute care but I know they would have sent us to the ER, which I didn't want to do.
We went to the doctor on Thursday and Dr. Henry (Dr. Lang was out of the office) said our best bet would to go to Peds outpatient and get some blood drawn and gets some fluids in him and in a couple hours if he looked better we could go home. Since he has the Port a Cath now it makes things alot easier. Well Ryland’s RSV test turned out neg. and after about 4 hours of some fluids he started perking up, so we got to go home. His sodium was just a little off but for him that makes a big difference. Also Ryland had a ear infection, which surprised me since he really hasn't had that many. He has been running a fever all week so I knew something was up. He slept a little better last night and he needed that. Kids his age should be getting at least 10 hours not 5. I'm still are doing the suction and the nebs, he is smiling again, that's how I know he's feeling better.
Dr. Henry suggested that we might want to take Ryland out of school for the next month or at least till the end of Jan. I don't know, he like school and likes being out and about. On Monday at school he threw a fit because he loves to cut paper and when they stopped he got mad. Ryland already getting into trouble at school, I love it. It's hard to say what to do. The last 2 years he's been at home and not around a lot of kids but still got sick.
I worked on Monday but missed wed. and now today. I was really hoping to get some extra money for Christmas but Ryland staying healthy is much more important. Now I know Kohl's won't give me hours because I missed two days this week. I like working at Kohl's but when it comes to employee with sick kids they don't care much. I called yesterday to let them know I might miss work today and my boss didn't even say I hope he gets better just I'll see you later. They have there Kohl's Cares for Kids thing but it excludes if you work for them. I should have know that no one would care because when I worked there before and Ryland was much sicker and in the PICU, no one ever asked how he was and I never even received a call to make sure he was okay.
Well, now that I vented about work I'm a little better. I got our Christmas picture back and now have to work at getting Christmas cards out, which I made it easy on myself and printed out everything instead of writing everything by hand. Ryland is sounding a little stuffed up so I better go get him. This is the first time in 4 days I have been able to put him down and let him watch TV. We just need prays now so we don't have to spend anytime in the Hospital. Also Ryland little buddy Greyson(from WI) is sick and in the Hospital. They can't get a IV in and he isn't able to be tube fed because of a bowel problem, so I know they could use some prays.
Nathan and Mitchell are still doing good but want snow. We all are excited because my brother Willy and his wife Misty will be coming for Christmas from SC. We(Misty's sister)are having a babyshower for them while they are up here, it's going to be fun.
Summer
Boy what a week. Ryland didn't sleep much last weekend but went to school on Monday and I thought okay we are good. Well I was wrong, Monday night his cold got bad and he didn't sleep good. I started Neb. treatments and started using the suction machine so he could breath. I figured if I kept those up we would be go to go. Ryland missed school the rest of the week. I called to get him in on Wed. but there were full, they said I could take him to acute care but I know they would have sent us to the ER, which I didn't want to do.
We went to the doctor on Thursday and Dr. Henry (Dr. Lang was out of the office) said our best bet would to go to Peds outpatient and get some blood drawn and gets some fluids in him and in a couple hours if he looked better we could go home. Since he has the Port a Cath now it makes things alot easier. Well Ryland’s RSV test turned out neg. and after about 4 hours of some fluids he started perking up, so we got to go home. His sodium was just a little off but for him that makes a big difference. Also Ryland had a ear infection, which surprised me since he really hasn't had that many. He has been running a fever all week so I knew something was up. He slept a little better last night and he needed that. Kids his age should be getting at least 10 hours not 5. I'm still are doing the suction and the nebs, he is smiling again, that's how I know he's feeling better.
Dr. Henry suggested that we might want to take Ryland out of school for the next month or at least till the end of Jan. I don't know, he like school and likes being out and about. On Monday at school he threw a fit because he loves to cut paper and when they stopped he got mad. Ryland already getting into trouble at school, I love it. It's hard to say what to do. The last 2 years he's been at home and not around a lot of kids but still got sick.
I worked on Monday but missed wed. and now today. I was really hoping to get some extra money for Christmas but Ryland staying healthy is much more important. Now I know Kohl's won't give me hours because I missed two days this week. I like working at Kohl's but when it comes to employee with sick kids they don't care much. I called yesterday to let them know I might miss work today and my boss didn't even say I hope he gets better just I'll see you later. They have there Kohl's Cares for Kids thing but it excludes if you work for them. I should have know that no one would care because when I worked there before and Ryland was much sicker and in the PICU, no one ever asked how he was and I never even received a call to make sure he was okay.
Well, now that I vented about work I'm a little better. I got our Christmas picture back and now have to work at getting Christmas cards out, which I made it easy on myself and printed out everything instead of writing everything by hand. Ryland is sounding a little stuffed up so I better go get him. This is the first time in 4 days I have been able to put him down and let him watch TV. We just need prays now so we don't have to spend anytime in the Hospital. Also Ryland little buddy Greyson(from WI) is sick and in the Hospital. They can't get a IV in and he isn't able to be tube fed because of a bowel problem, so I know they could use some prays.
Nathan and Mitchell are still doing good but want snow. We all are excited because my brother Willy and his wife Misty will be coming for Christmas from SC. We(Misty's sister)are having a babyshower for them while they are up here, it's going to be fun.
Summer
Ryland seems to like school but is having a hard time with sleeping. He didn't go to school today because he didn't sleep the greatest last night. He was pretty wiped out after last week.
All the kids are so sweet and put toys on his tray so he could play. He loves cutting paper. They have a scissors you put in his hands and then you put your hands over his. He gets mad when we are done cutting. Of course him missed his first day of school because of the weather. He get OT, PT and ST at school now so no more having anyone at our house.
Ryland still going to Swim Therapy on Thursdays and last week he was super tired because of his busy week. The school doesn't have any equipment yet so we either hold him or put him in his Kid Kart. I decided to go to school for the first couple week so help everyone learn. Starting next week I'll be dropping him off and picking him up mon-thurs. I figured while he is at school I can get so house work done. Which right now is so far be hide.
I sure hope we can get this sleep thing figured out. Today grandma Suzi didn't let him take a nap while I was at work. I know he is getting tired right now and I need to get the meds going. I think once the sleep thing gets under control things will go easier.
As far as Nathan and Mitchell not much new. Just school and for Mitchell lots of homework, which he doesn't like to much. The boys wanted to get into Wrestling but I didn't here anything about so maybe next year.
It's hard to believe that it's almost Christmas and if you are wondering, No I am not ready at all. The kids made out there lists 2 weeks ago. Mitchell sent out a letter to Santa with everyone’s lists, he even made out one for Ryland. We decided to do a fake tree this year, much easier for me and the kids. Ryland has already gotten over to the tree and played with it. Me and Nick are hoping to do some shopping on the 16th but Nick isn't much for shopping so this should be fun.
Okay that's it, if you would like to check out more pictures go to one of these sites:
www.dropshots.com/rylandsmom
www.dropshots.com/rylandatschool
www.dropshots.com/rylands3birthday
I have to help out at the AR store tomorrow, so daddy will be taking Ryland to school and also on thursday because I have a dentist appt.
Summer
He got a cool Thomas train for my brother Danny or I guess I should said uncle Danny. He loves to watch that thing go round and round. A glow bug from Abby and her family, she works with Danny at the Keg and she just loves Ryland. TMX Elmo from mommy and daddy. Little Einstein video from Nathan and Mitchell. Many other presents but those are his 3 fav right now. So if any one is looking for Christmas stuff for Ryland, I would say more Thomas the Train stuff, like tracks. It's not the wooden one but the plastic tracks with the electrical train, he has Thomas and the green train, can't think of the name.
**I want to Thank the Ramada Inn in Sioux Falls for everything they did to make Ryland's birthday special. And Grandma Suzi, Paul, Danny, Willy, Jackie and family, Abby and family, Sheila and kids, Mark, Gina and family, for coming to the party and celebrating Ryland's 3rd Birthday. And also to Amy, Grayson's mom (that's Ryland's buddy from WI). There was so much love and it made my day go by much easier.**
As for Ryland school meeting. I was hoping for him to go to CCHS maybe a couple days but for now he will be going to school here in Hartford. I am still going to try to get him into CCHS for OT, PT or ST once a week. For now he will go to school Mon-Thurs for 3 3/4 hours in the AM. I know I am still working on the sleeping thing. I have for 2 months now but I don't know if Ryland will every be on a schedule. I will more than likely will be working Fri, Sat and Sun since the other days just are not going to work out, unless I can work in the afternoon which I really don't want to do.
We also had a appt. at CCHS and he got his AFO's adjusted because he has grown so much. He kid kart needed some adjustments and that got done also. Ryland is getting tighter with his legs but Dr. Johnson thinks it's because he just keeps getting longer. I will be messing with his Baclofen to get a good dose and see what will work to keep him a little less tight through out the day. That's about it.
You can check out Pictures and Videos of Ryland's birthday party here Ryland's Third Birthday You have to make sure to watch the video of Ryland swimming, it is so cute. There are 2 days of pics and videos because we stayed over night. So Nov. 19th would have the picture of Ryland's cake hand and I think the 20th has the good one of his swimming. You you can leave a comment and don't forget to sign the guestbook.
Summer
Ryland's birthday is on Sunday and hopefully if all goes as plan we will be going swimming. It will be a Elmo Birthday Party, since he loves Elmo. If you would like to send him a card you can send it to: PO Box 212, Hartford, SD, 57033 I still find it hard to believe that he will be 3 the last year has gone by so fast.
Not much new with Nathan and Mitchell. Except for the doctor visit on Monday. Step is going around the school and after a long weekend Mitchell ended up with it. You think we would have been safe. They didn't have school on Thurs or Friday and spent all weekend at Grandma Suzi place. So Mitchell has been home Monday and Tuesday. I am hoping no one else gets it. It's looking pretty safe, it's Wednesday and nothing from anyone else yet. Nathan and Mitchell got there report cards, both doing good.
One Sunday we went to a Soup and Pie Supper for church. Everyone had fun and it was to nice to get out of the house and do something other then doctor appts. Ryland loved all the noise from the other kids playing and the adults talking. When we were getting ready to leave I had a couple parents come up to me and say, You're kids are so well behaved, for boys. It really made my day, stuff like that helps me get through some of my harder days.
Well I guess my next update will be of the Party. Oh and Nick's return from Vegas. He's called a couple times and is having fun. He keeps saying we have to bring Ryland here, he would love it. And also, everything is still looking good with my niece (due in March). Me and my sister n law's sister are planning the baby shower. They already have a name for the baby girl, so planning everything and buying stuff should be easy. That's it, and here I said there wasn't much new.
Summer
Ryland is doing good, just a little stuffy nose at night, which made him threw up last night. Well it has been busy with doctor appts. Ryland west to the dentist on the 25th for his first cleaning. I was surprised at how good he was. Never cried even during X-rays, which I hate to have. Everything look good, even with all the grinding he does his teeth aren’t bad. Nathan and Mitchell were a different story.lol They switched formula and he with be on Bright Beginning Soy Pediatric drink, it’s like Pediasure but soy. He likes to drink it but it sure smells, especially coming up. He ate to much last week and threw up on grandma Suzi. All his therapies are going good and he will start to go to swim on Thursdays now. We miss one appt since I didn’t write it down, woops. We will be going in sometime next month for his flu shots, nothing big.
Nathan won his last game which there played at USD Dome. Mitchell’s team lost there last game but didn’t a great job. So with football being over things have slowed down there. No more running to Sioux Falls every Thursday and Saturday. Now they want to play a winter sport, hum. School is going good for both of them. I am helping out at Mitchell’s Halloween party on Tuesday. My mom was suppose to watch Ryland but when she was in FL she got bit by a spider and has gotten really sick. She can hardly hold Ryland but she still tries. I never thought something so little could do so much to someone, I’m talking about the spider. Well not much else. I could be forgetting something but I am kind of tired. I have to stay up so I can add warm formula to Ryland’s feeding bag. If it is to cold he will wake up. Oh, I also got Ryland's 3rd birthday pictures taken. I wish I would have had more money, to get more of his pictures because they tured out so good. He is such a ham when it comes to getting his picture taken.
Summer
Ryland has been okay. He hasn't been sick but has been very, very crabby lately. He is doing really good in swim therapy but missed last week because they closed the pool due to a parasite in the pool. He also got his Port-a-Cath flushed but something went wrong so we had to go back in Friday and get it done again to make sure it was okay. We also saw the doctor to make sure he didn't get sick with the pool thing. Everything looked good there.
He still is getting OT, PT and ST twice a week. Last Thursday Cory his ST took some of the kids that he sees to the Apple Orchard and Ryland got to get a pumpkin. We had fun and the weather was great. After that me and Ryland went into Sioux Falls. I thought I would see if my hair was long enough to donate to Locks of Love and it was so off it came. I figured Ryland was doing good and he was happy so he sat and watched the Wiggles while I got my hair cut. Yes, it is short. I didn't tell anyone I was doing it that day so Nathan, Mitchell and Nick were surprised. Ryland doesn't mind, well he does because he can't eat my hair anymore.lol It sure is a little easier getting ready, less drying time.
We have been busy with Nathan and Mitchell's football games. Nathan has lost a couple but Mitchell's team is undefeated. Nathan won tonight, so they would have to win the next 2 to be up in the standings. Talking about football, we went to the West Central homecoming football game Sept 29th and helped hand out programs and take tickets. Ryland had fun, he just sat in his kid kart watching all the people go by, he did so good. We also have had boy scout stuff going on. Mitchell is selling popcorn, so if you live near by let me know and you can get some from Mitchell.
It's hard to believe that in little over a month Ryland will be THREE. I am working on the party. We want to maybe go to a motel and go swimming, just depends on money. If you are planning on getting Ryland something please No toys or books. Ryland has so many of both that he can't play with. He has a wish list at Wal-Mart and if you can't make it to walmart, then batteries. We go through alot with all of his switch toys. We are also looking into getting a back up battier for his DVD player, they are about $50. We can't live without his DVD player.
Well that's about it and if I forgot something I'll add more. Okay one more thing: My sister in law, my brother Willy's wife is doing good. The baby looks good and they had a ultra sound a couple weeks ago. Everyone is so excited, I just wish they lived closer. I am hoping for a girl and so is everyone else,lol, well Willy doesn't care what it is, he is just happy that he is going to be a daddy. Okay now that's it. Someone is starting to fall asleep, thank you god, he didn't get a nap today, so from about 8pm he has been crabby. I am hoping to get some sleep also but everyone needs laundry done, so we'll see.
Summer
Also Mitchell had his game on Saturday and won 32 to 0. It was nice and cool and prefect weather for Ryland.
I am kind of going backwards here. On Friday Ryland had swim therapy and we did some runny around getting stuff ready for the party.
Thursday Nathan had a game but lost. Everthing else is the same as before with therapy and Ins. BS. We have a meeting with the school on Friday to determide were Ryland will be going to school. When he turns 3 he will be done with Birth to Three. **Reminder** we will be having a BIG party for his 3rd birthday since we might not be around for his 4th. (we are hoping to go on the Make-A-Wish trip for his 4th birthday)
One more thing: You can go online and vote for our Fear Factory Party pictures. Go to www.houseparty.com/fearfactory and there will be pictures under Party vision click so you can view 4 or 25 at a time, it's easier. Look thougtht the picture till you find Ryland, Nathan, Mitchell or Me. Click on it and then click again till you can vote. There are about 20 different picture you can vote on, if you want you can vote on all of them. If we get the most votes we can win things. Thanks!
We can use some prays for Ryland so he keeps staying healthy and this school thing works out. Check out the pictures below of the party.
Summer
Ryland had his Port-A-Cath flushed last week for the first time and it took like 5 minutes. He was great and never fussed. He had swim therapy Friday and had a different therapist and of course he had to give her a hard time. Kept trying to drink the water and also had a little poopy diaper. I don’t think she was ready for him to be so wild. He had been using his walker. We have came to the conclusion that he would rather be outside then inside. He doesn’t seem like he wants to do any walking in the house but when he gets outside he’ll go. He hasn’t used his stander as much lately. It’s like between the walker, leg braces, stretching and the stander we don’t have a lot of time. Also he wears knee mobilizes at night so I don’t want to do to much in the morning with equipment, it seems like it’s to much at times. Now for sleeping, I don’t every think that will be normal. He has his nights were he wakes up crying at 3am and I just don’t know what is wrong, it takes a hour or so but he does calm down. He hasn’t had a good 10 hours a sleep in a long, long time. It is funny to watch him sleep because he has to have to of the best dreams, I have caught him giggling in his sleep. As for his other therapies they are going pretty good. Cory his ST has been taking him for walks and he just loves it. Out of all the therapist Cory is his favorite.
Since Ryland will be turning 3 soon, we are looking into to school. We have a meeting next week to talk more about it. It’s hard to believe that he will be 3 in November. We are really hoping he will go to Children’s Care Hospital and School, since they specialize just in special needs kids. Just the times I have been there, they know so much about equipment and what would be better for toys and switches for Ryland. I saw the toy room one day and Wow, toys and more toys. There are a couple people that know Ryland and every time they see us they always come up to ask about him. I know this is far off but I would love for Ryland to know a couple colors and animals. I know he could do it with help. He knows so much and if you just sit and watch him play you can tell what it is he is really trying to do.
Mitchell’s birthday went good. We just had cake and pizza at home. He is having his birthday party this Saturday. I was hoping for better weather, since I planned to do more out door stuff. Nathan had a football game last Thursday and has another one this Thursday. Mitchell has a game Saturday early so it is looking to be a long day. Boy scouts also started back up so, I guess, here we go. I also signed up to help out at the school this year. Nothing big just a couple Wednesday to help out with the AR store. The past 2 years I have always wanted to help but everything was so confusing with Ryland. Well that’s about it. Everyone is healthy except for mom and I’ve been going no stop, kind of. Till next time.
Summer
We are having problems with him chewing on the pads on the front. I can't wait to get him outside again. He does really good in it but I don't want to over do it. I think he might get sore from the seat. We have had a really good week again and no doctor appts. just swim therapy on Friday, which he was very happy to be back at. Well sleeping is still a problem and last night he wouldn't sleep unless I was holding him. He has he good days, it's just the bad days that can cause problems. He is enjoy the cooler weather and loves it at 65.
We got a chance to make it to Life Light Music Festive on Saturday. It was a little muddy but his kid kart didn't seem to have a problem at all. We did some kids activities, like face painting and ballons animals. Ryland did get fussy but he was just hungry. We sat down and listen to the music and ended up staying later because we kind of got trapped. People and chairs started to fill in fast and it was hard to even walk out so we weren't getting the kid kart out till more people left. Ryland fell asleep but woke up in the car and stayed up till 11am the next day, yup you heard me right 10pm Sat. night till 11am Sunday.
Also Nathan had his first game Thursday. It was prefect weather and Ryland sat and watch the game just like everyone else and never fussed. Sorry to say Nathan's team didn't win.
Let's see Ryland also had his first sleepover. Gracie, a friend of mine's, little girl stayed overnight. It kind of gave her a little break, usally Grace won't stay with anyone. Grace does good with Ryland and loves his toys. She also loves to pick on Nathan and Mitchell.
MITCHELL'S golden BIRTHDAY is Saturday, he will be 9 on the 9th. We will be having his party on the 16th. He would love to get cards, you can send them to Mitchell c/o Summer Jesse, PO Box 212, Hartford, SD, 57033
As for seeing new picture and video's check out: http://www.dropshots.com/rylandsmom
That's got video of Nathan and Mitchell's football game.
http://rylandjesse.tripod.com
That's got his walking video
Summer mommy to Big Boy Ryland
School started Thursday and the kids seemed ready to go, I sure was. I love my kids dearly but now I know why my mom loved when school started back up. Nathan and Mitchell were starting to get bored and would always let me know it. We didn’t do a whole lot Thursday and Friday, besides me waking up at 4am so Ryland could watch cartoons, yes he did it all week, 4, 5am what’s the different.
Saturday was Mitchell first football game. I kind was behide on getting ready for that so we had to make a stop to get yellow socks before the game. Oh, and that almost didn’t happen because some young kid in a pickup cut me off, lucky I was watching, guess what he was talking on his cell phone. Well we made it to the game, They won 26 to 0, Mitchell was really happy and he even made some good tackles. It came pretty close to being to hot for Ryland but we got lucky and there was just a little breeze and some clouds. After the game we had to get some school supplies that the boys still needed and I had to get Rylands meds from Walgreens and formula from Wal-Mart. Sioux Falls is always so much fun on a Sat at 3pm., NOT. It wasn’t to bad and Ryland really never even cried. Got home around 5 and chilled the rest of the day. Sunday was that way also.
So Monday started and the kids are back off to school. We had a busy night. Nathan had Football pictures and practice. Mitchell had football pictures and a boy scout thing doing on. Me and Ryland walked down to met Mitchell after the pictures and went to the boy scout thing at the park. This whole time Ryland is just loving it. It was 64 out and for Ryland that perfect weather. Everyone is wearing coats and here’s Ryland pants and t-shirt and still toasty warm. He had so much fun, there was lots of kids and lots of noise. He sat in his wagon and just watched everything go on. I wanted to walk up to the Post Office the check the mail but 2 blocks away from the house it started to rain, Ryland didn’t care and would have loved it but I didn’t feel like getting wet. Oh, Ryland had his Red Wagon Umbrella, so did get to wet. He loves to be outside and his face when I put him in his wagon or kid kart it’s hard to forget and I’ll fall asleep tonight with that image in my head.
As for therapy he starts back at Swim Therapy Friday. He still has OT and PT twice a week. Speech therapy lately has only been once a week. He is doing really good and I can’t wait to get him back in the pool. Oh, one more thing we are still having problems with Insurance. I have spend about 1 hour every week the past 3 month trying to get this thing figured out with Nick’s Ins through Citibank. I thought it was all done with and they had the information they needed, but today I get this call saying they can’t pay because of the Birthday Rule. Okay so now 4 or more months of Hospital stays, doctor visits, supplies and medication aren’t paid for. See Medicaid won’t pay because there are 2nd when it comes to Insurance. So now Ryland won’t be getting his walker and the billing departments for everyone are going to be calling me saying why isn’t this being paid. I talked to someone last week and got all these conformation numbers so stuff could get paid for. They weren’t being paid before because they didn’t have some information right so I got that all figured out and they told me that it should all be, being paid for now. Well now it’s NOT. I wish we would never have put Ryland down on the Ins. But I never thought that they would cover him. Also before all this was going on the Disabled Children’s Program DCP (Medicaid) would always pay and we never got calls from them, just a yearly form we filled out about Ryland disability. So now we are trying to help out with the cost of Ryland’s bills with a private Ins and we and getting penalized for it. What does a person do. I really don’t have the time and energy anymore to deal with these people/companies. So now I am suppose to be getting a call from someone the DCP and talking with them again and they have to call our Insurance and well Bla, Bla, Bla.
It’s hard enough having to deal with a crabby kid that wakes up at 4am and is so tired later in the day that getting him down for a nap is impossible. Getting meds ready like 4 times a day, making sure he is getting enough fluids. Feeding him a bottle that at times takes 45mins. Trying to figure out why he is crying and what it is that is hurting him. bath time takes 45mins because he is hard to wash. Getting him dressed isn’t as easy as most people think it would be. Claming him down after he bites his fingers or drops a toy. Putting on his braces, putting him in his stander for a least 2 hours a day. Stretching him and getting his teeth brushed. Then comes night time, after he falls asleep figuring out how much he needs for his overnight drip and how much per hour and what time will it need to end. Warming up the formula. And even before the feed starts getting him to sleep, which some days is easier than other. Now, add to that, cleaning, cooking and doing laundry. Oh, I can’t forget, I need a shower also, which now usually doesn’t happen till the boys get home from school and Nathan watches Ryland while I get 15 mins to myself. That's my day! and all for now.
Summer
almost forget to add we have went 4 weeks without a doctors appt, how cool!
Nathan and Mitchell are pretty sore, after a 2 weeks of Football practice. I know it is going to be hard for them starting back at school. It takes a good 2 weeks to get back in the swing of things. Nathan is in 6th grade now and only has to walk a block to school but Mitchell still will have to leave 30mins earlier than Nathan to get to school. It should be interesting for Nathan and Mitchell since they are building a new school here. Nathan's home room class is on the stage in the gym.
We had a open house for him and it was interesting. I had to take Ryland with me and nothing of course was hanicap accessible, except for the gym. It was hot and the whole time I had to fan Ryland. Of course I was kind of mad because I wanted to enjoy meeting teachers and everyone but with Ryland getting hotter by the min. we had to cut it short. But it was a cool night out so we did have a nice walk. Mitchell's openhouse is next week and they start school Thursday.
I wanted to let you know that Ryland's friend Amaya Faith was born last Saturday. She is having a tough time but she is a fighter. Her being a week old is a miracle within it's self. She still has alot to overcome but with prays and hope, I believe God will show her, her way. So please add her to your prays tonight. UPDATE 8/20 8:00pm It breaks my heart to have to write this but Amaya Faith passed away this morning.
I started a new photosite to make it easier for everyone to view new photo's and video's. www.dropshots.com/rylandsmom
That's about it for now. I should try to get Ryland to sleep but I am afraid that he will just look at me and give me his Ha, Ha I'm not going to sleep smile. Till next time.
Summer
We have went for a couple walks later at night and he just loves it. Hopefully his Bronco walker will be here before it startes to get to cold out or starts to snow.
We been dealing with alot with having a new Insurance on him. He is still on the Disabled Childrens Program but we have Ins. through Nick's work also. So it kind of goes like if his Ins. won't pay for it Medicad won't either. But they would have paid for it before Ryland got on Nick's Ins. Doesn't really make much sense, now does it. I could go on and on but I am afraid that my hands and fingers would fall asleep.
Nathan and Mitchell started Football and are practicing almost every night now. I would love to go see them practice but with it being hot and sticking out at 6:30 still we just stay indoors. It was start to cool down soon enough so we'll wait. I don't think Nathan and Mitchell are really ready for school to start. I know I'm not and haven't been school shopping yet. I have found some pretty good deals on Ebay for the kids.
Just one more thing before I head off to bed. Well Ryland took a late nap today so needless to say he was up late. Nick came home and Ryland of course was sleeping but woke up shorty after. Me Ryland & Nathan were play games on the computer (mitchell went to bed early) Well Ryland loves to hit the key on the key board, so he was kind of messes up the screen and whatnot, oh he also pulled the phone of the the desk alot. Althought he never let the ballon go during this whole time. He loves to watch stuff on the screen. So about 2 hours later he still has the ballon and its midnight or so. I knew he wasn't going to go to bed if he still was playing with the ballon so I took it away. He kind of gave me a look but they looked at Daddy with his puppy dog eyes, like come on get it for me. He did that for a good 5 mins, looking at the baloon and then at daddy back and forth. It was so funny. He finally gave up and we played a little and fell asleep at about 1am. I really should have been taping him doing his little thing with daddy, he knew that mommy wasn't going to get it so he really worked daddy over.
That's about it for now I just wanted to tell that story. Not much planned for the weekend, well a birthday party but that's about it. We are trying to take it easy, with not having to go in the car, I think the car seat makes his chest sore.
Also Ryland will be having a new friend soon. I found a family in Sioux Falls that is having a girl that's been dia. with semi-lobar Holoprosencephaly, just like Ryland. But she also has some other problems that will not be fully understood till she is born. So she could really use some extra prays. She is due anyday now.
Summer
Summer
Summer
Sioux Valley
Hospital phone 605-328-1205
Then also we got a call saying that Children's Care (CCHS)isn't part of Nick's Ins. network so his walking wasn't going to get paid for. Also Medicad won't pay since our Ins isn't paying. So CCHS filled paper work to become part of there network but that is going to take till the middle of Sep, so that's putting Ryland getting his walker sometime in Oct. So now we won't beable to be using for the summertime. But there's nothing I can do. I didn't think Nick's Ins would even cover Ryland because of all his health problems. It's just been a headache ever since then. With Medicad if Ryland needed, no problem he got it. Now we have to call Nick's Ins company before we doing anything, like I have time for that. Why does Ins have to be such a pain in the butt. Then Medicad, why is it that if our Ins isn't paying for they can't, I mean they always did before we had this other Ins.
So here I am trying to get laudry done, house picked up and getting everything ready for today and then add all this other Crap on top of it. So no I didn't get the laudry all done and the house isn't picked up. I like to come home to a clean house, oh well.
I better go get ready and finish packing. At least Ryland is in a better mood today and woke up with a Smile. Well I'll update after his surgery.
Summer
After we got back on the road we headed home to grab a bite to eat and get washed up, then we were off the Canaries Baseball game. My Great Aunt FiFi bought tickets. My Aunt, 2nd cousin and her kids were there. I use to baby-sit for these kids and it’s funny to see how big there are now. Nathan and Mitchell tried most of the night to get a foul ball but never got one. Ryland fell asleep in the 7th inning and slept all the way through the Fireworks, little stinker. They were loud and he never even moved until we got to the car then he woke up. We took it easy on Sunday, plus I was sunburned so I did’t want to do anything and it was hot out.
So we are to today. Had a appointment with Dr.Karl at 1:00, Dr. Neidich at 2:30 and at CCHS at 3:30. Then we also had to pick up Nathan and Mitchell football equipment at 6:30 and 7:30.
Dr. Karl went ahead and schedule his surgery for Aug. 17th, it’s looking like we will be there a day before surgery and a day after as long as everything goes good. I thought that’s what the plans were till I got home and his nurse call and left a message wondering if Aug. 2nd would be better for use. I am thinking that doesn’t give me to much time to plan, anyways we will see.
Dr. Neidich was about the same as it always is. They upped his fluid intake to 38 oz.
So off to CCHS to get fitted for knee mobilizes. They want him to wear them at night because he curls his legs and these will keep his leg strait why’ll he sleeps. I am hoping he doesn’t get to mad about them being on his leg.
So at the Football equipment pick we were just waiting for it to down pour. During Mitchell time it rained a little but at the end of Nathan’s it just started to down pour. Luckily I had Ryland in the car before it started. I think Mitchell had his equipment on from the time we got home till he went to bed, who know he might be sleeping in it. This will be Nathan’s 3rd year of playing and Mitchell first and you can tell. They start practice Aug. 7th and games start three weeks later. It sometimes feel like I just got done driving them all over the place for baseball.
Everything else is the same with Therapy and swimming. We are all looking forward to getting his bronco walking. Tonight he is wearing his Frog PJ’s that grandma Rose bought. The waist was a little big so I had to sew it up a little so it would fit. He looks so cute in them. I wanted to get a picture of him in them but he was a little fussy getting to bed, so hopefully he is happier in the mourning. When he finally got to sleep I decided to trim his hair it was cute being longer and having curls but with his heat it was getting to be a little to much. If he is in his deep sleep it’s pretty easy to do. Well that’s about it I better get some sleep, Ryland has been waking up early then he usually does. I think it’s because he doesn’t want to miss he cartoons.
Summer
UPDATE JULY 26th
**********************
We will be going in on the 2nd of August for Rylands Surgery and hopefully be out the 4th. Will update after surgery on the 3rd
After we got back on the road we headed home to grab a bite to eat and get washed up, then we were off the Canaries Baseball game. My Great Aunt FiFi bought tickets. My Aunt, 2nd cousin and her kids were there. I use to baby-sit for these kids and it’s funny to see how big there are now. Nathan and Mitchell tried most of the night to get a foul ball but never got one. Ryland fell asleep in the 7th inning and slept all the way through the Fireworks, little stinker. They were loud and he never even moved until we got to the car then he woke up. We took it easy on Sunday, plus I was sunburned so I did’t want to do anything and it was hot out.
So we are to today. Had a appointment with Dr.Karl at 1:00, Dr. Neidich at 2:30 and at CCHS at 3:30. Then we also had to pick up Nathan and Mitchell football equipment at 6:30 and 7:30.
Dr. Karl went ahead and schedule his surgery for Aug. 17th, it’s looking like we will be there a day before surgery and a day after as long as everything goes good. I thought that’s what the plans were till I got home and his nurse call and left a message wondering if Aug. 2nd would be better for use. I am thinking that doesn’t give me to much time to plan, anyways we will see.
Dr. Neidich was about the same as it always is. They upped his fluid intake to 38 oz.
So off to CCHS to get fitted for knee mobilizes. They want him to wear them at night because he curls his legs and these will keep his leg strait why’ll he sleeps. I am hoping he doesn’t get to mad about them being on his leg.
So at the Football equipment pick we were just waiting for it to down pour. During Mitchell time it rained a little but at the end of Nathan’s it just started to down pour. Luckily I had Ryland in the car before it started. I think Mitchell had his equipment on from the time we got home till he went to bed, who know he might be sleeping in it. This will be Nathan’s 3rd year of playing and Mitchell first and you can tell. They start practice Aug. 7th and games start three weeks later. It sometimes feel like I just got done driving them all over the place for baseball.
Everything else is the same with Therapy and swimming. We are all looking forward to getting his bronco walking. Tonight he is wearing his Frog PJ’s that grandma Rose bought. The waist was a little big so I had to sew it up a little so it would fit. He looks so cute in them. I wanted to get a picture of him in them but he was a little fussy getting to bed, so hopefully he is happier in the mourning. When he finally got to sleep I decided to trim his hair it was cute being longer and having curls but with his heat it was getting to be a little to much. If he is in his deep sleep it’s pretty easy to do. Well that’s about it I better get some sleep, Ryland has been waking up early then he usually does. I think it’s because he doesn’t want to miss he cartoons.
Summer
July 11th -Ryland had a appointment at CCHS. They had to fix his AFO’s because he could get out of them. They also fitted him for a walker so he will be getting that hopefully within the next month, I can’t wait. He will continue swim therapy. His hamstrings are still tight and they are hoping that they will get better over the next couple of months if not we are looking in to botox. We might start putting something on his legs at night so that they are straight, just on one leg and then the next night the other leg.
The same day we went to a canaries baseball game. Mitchell got to run out on the field with one of the players. It was a little warm out that day but we went to the gift shop a couple of times to cool down. We also put icepack be hide him in is Kid Kart. He enjoyed being outside but did get a little crabby towards the end. We also ran into a couple of my moms (Rylands grandma Suzi) relatives.
July 14th- Ryland had a doctors appointment with Dr. Lang for a check-up and to get a referal for Dr.Karl to talk about getting a Porta cath. We didn’t have swim therapy that day, she was gone. By the end of the night Ryland started to cough and get congested. So..
July15th-Had to take Ryland into Acute Care. He woke up sounding terrible. We also were having to use his suction machine to get all the snot out. They put him on antibiotic and told us to just keep doing neb treatments. I had planned on taking Nathan and Mitchell to Jazz Fest and go to Thunder Road but that had to be cancelled since me and Ryland spent a couple hours doing his thing. It wasn’t all that bad of a day. Me and Nick went out for supper with one of his friends. Nothing big I was back home by 8:00. Nick then went out with his friends. I stayed at home and me and the boys watched TV.
As for what else is happening it’s pretty much the same. OT, PT and ST twice a week. Nathan had a orthodontist appt Monday and Ryland of course he did his normal poopy diaper in the car, never fails if we go somewhere he has one.
We are hoping that it’s not to hot out Saturday and we can go to the Air Show, I think Ryland would love it. He has 3 appointment next Monday (know I’m not crazy) and the boys have to pick up football equipment that night. So it will be a long day. On the 29th we meet with the Make-A-Wish people. I was bummed that we couldn’t go to Hot Harley Nights but it was just to warm out for Ryland.
Well that’s it for now my next post will probable be talking about when they will do Ryland’s Porta-cath surgery. I am hoping to get it done before October but we’ll have to see. That’s all for now.
Summer
While we were in the hospital, they were talking about us thinking about getting a Port-a-cath put in because Ryland is so hard to get a IV in. This time it took 4 pokes and 2 different people. Ryland doesn't have to many places left to put a IV in. It's one of those things that we can remove later down the road if we need to. We have to go talk to his doctors about it but we are leaning towards doing it.
We were all bummed about the hospital stay because we had plans for the weekend and the 4th. Their was Citibank family outing on Sat. we missed plus going to the parade and seeing fireworks on the 4th. Ryland loves to watch Fireworks. I want to sent out a big Thank You to my friend Lois for talking Nathan and Mitchell out on the 4th to light fireworks. They almost had to spend all night at home.
Ryland decided to get up at 4:30 this morning I didn't get to bed till like 3. He later fell back asleep but I still cancel his Swim therapy because I know he is going to be crabby today. We really wanted to go to the Hot Harley Night but it is looking like it is going to be really HOT out so we might have to skip it. That's about it and hopefully thing will get back to normal.
Summer
Yes we are still in the Hospital but hopefully we will be our tommrow.
Summer
He’s been in pretty good moods lately but he has his days. Sleeping is getting better but it is still getting him to sleep that causes problems. He is still doing swim therapy and he gets better every week. He also started OT, PT and ST twice a week so now we have stuff going on everyday.
Nathan and Mitchell are enjoying the summertime. They are both in baseball so almost every night during the week we have a game but that will end in a couple weeks. They like to play with Ryland when they get up and I know when it comes time to go back to school it’s going to be hard. Football will start up sometime in July and hopefully they will be able to play. Mitchell got new glasses not as strong as the last pair so that’s good. Since they got out of school not much has been going on with them.
We started to plan on were Ryland will be going for preschool, which he will start after he turns three. We really want him to go to CCHS but it is up to the school district. I have nothing against him going to West Central. I just don’t think that they won’t be able to handle his needs and the expectations of what I want him to accomplish. Ryland won’t learn how to count to ten or learn all his colors but I want him to learn and be able to tell me if his hungry or if something’s hurt. I want him to pick up a toy and put it in his mouth or maybe even throw it. I would love to hear him say mommy or something that sound like mommy. It’s the little things that most people take for granted when it comes to raising kids but for me those little things are what are the most important to me when it comes to him learning. I look at it this way you won’t stick a 6 month old in a room full of 3 and 4 years olds.
I should also mention that Ryland will be getting a wish from the Make A Wish Foundation. We got the paper work and now we just need to sit down with Ryland’s team and figure out what we are to do or go. I am thinking Disney World since he loves colors and noise. I would love to go sometime around his 4th birthday. With his whole temperate thing we couldn’t go when it is hot out. I was thinking about doing it on his 5th birthday but that’s 2 ½ years away and so much could happen in that time also he will be bigger by that time.
As for our trip to the HPE Family Weekend. Well it went great. It was nice to finally meet some of the families. Ryland ended up with pink eye again but we got a prescription call to a Walgreens in Indianapolis. I wish we would have had more time to spend with everyone. Nathan and Mitchell were able to meet a lot of kids there age that deal with everything that they deal with. For them I think it was nice because they didn’t have to explain to anyone what was wrong with there brother. Ryland got a lot of attention since he was the one that did the artwork for the shirts, nametags and posters. We also met Ryland’s twin. There was a little boy named Grayson that looked a lot like Ryland. The best part about the weekend was, all the kids got to dress up in costumes and have a parade. We had fun and I can’t wait for the next meeting.
A couple weeks ago was the Children’s Miracle Network broadcast and Ryland did the artwork for there shirts. We made a frog using his feet. It was the same artwork that we used on our Families for HoPE shirts. They had us on for a couple of minutes. Most of the time we just walked around and talked to people. It was a good day. Nathan and Mitchell had fun and also made a new friend.
Well I should get to bed since Ryland is sleeping and he has OT, PT and ST tomorrow or I guess you could say today. It was my birthday today the 20th and I couldn't have gotten a better gift, finally being able to get on the internet again and spending the day with my kids (even through Nathan and Mitchell spend most of the day fighting).
Summer
He missed swim therepy but we took a five mile trip on the bike trails in his kid kart. He just loved it. I had on rollerblades so I got a real workout. Nathan, Mitchell and Grandma Suzi all had bikes.
Since my last post not much had happen. We just are getting all ready for our trip to Indianapolis for the HPE family Weekend. We leave this Thursday at 11PM. Hopefully everything works out.
We had Easter at G-Ma Rose and G-pa Mike's but we also ran to Luverne MN to see my Aunt, cousin and his family. Then came back to Hartford for Supper. That's about it for now. Ryland is getting crabby.
Summer
We leave for are HPE family Weekend on the 20th which is also Nathan's birthday. I am looking forward to meeting many other families. It's going to be a long drive but it will be worth it. (We are still looking for some donation to help with the cost of the trip.)
Nathan and Mitchell are both busy. Mitchell started soccer (won the first game) and Nathan is starting practice for Baseball. Mitchell is still in boyscouts but that is almost over with. They both are looking forward to the trip to IN. It is going to be great for them to meet other kids that have sibling with HPE.
Nick loves his job at Citibank and has cut back at Target. As for me I still watch Kayla Mon-Thur and she keeps me busy. She does so good with Ryland, it's like she know what he can and can't do and trys to help him with toys.
Well that's about it. Everyone Have a Great Easter.
Summer
We have been busy with alot of stuff but I don't have any time to talk about it but I try later.
Ryland doing good so that's all that matters.
Summer
Nick started a new job at Citibank but still works at Target to. We found out yesterday that Nathan is going to need braces on the top teeth. ($$$$) Then later down the road on all his teeth. Mitchell is needing new glasses. So added to all the Ryland appt. I get to add Nathan trips ever 4 to 6 weeks.
We have a really busy March. Since we decided to be a Childrens Miricle Network Family we have a couple things going on. We are participting in two Dance Marathon this month but they sound like fun. One is at USD and the other is a Augustana.
Ryland has doctor appointment almost everyweek and two for the Boys, plus 1 for myself. Then you add swim therephy into also. I am still having trouble with my ulcer and our insurance is not paying for the meds (with doesn't help with the stress part). Well anyway I better get home. Daddy has all the boys at home and they are working on Mitchell Pinewood Derby Car. Pray that Ryland stays heathly. We are still planning on going to the HPE Family Weekend in April.
Summer
Nathan and Mitchell got to do a little swimming on Sunday. I got out for a little bit and went and saw them. It's nice that they didn't have school today, they are up here now with Grandma Suzi. Mitchell made a smiley face for Ryland out of popsicle sticks and felt. We have a pretty busy week ahead dentist apps. and doctor apps. also.
We might be interviewed for a radio station from Watertown for CMN. They asked us but haven't gotten back to us about it. It got pretty busy up at the hospital just in the past couple hours.
Well I might not get to update before we leave. So if they is no more posts after this one for awhile that means we got out.
Summer
looking forward to having fun this weekend and spending time with my husband and kids. The week didn't start off good. I had to go to the ER on sunday with stomach pain. Never guess what it was, a ulcer. So we left the ER at 3am had to stop and get my medication and got another surpise. Our insurence won't cover it. They asked
what I ate because your diet can cause problams and then asked if I had a lot of Stress going on, me and Nick both laughted. So now I have to watch what I eat, no chocolate or caffeine there's other stuff I have to watch out for but these to are hard to go without.
Ryland is sleeping pretty good right now that's the only reason I am able to get on the computer. It looks like I'll be sleeping in my clothes. Nick didn't get up to bring me my stuff before work. I have nothing just what I was wearing, which includes a pucky shirt.I just hope my shampoo, lotion and other liquids that are in the car
don't freeze, it's like -20 outside. But I should go get some sleep try to update more later
Summer
We started back at swim therapy this week. Ryland does so good and loves the water. Hopefully the next step is we will be looking into a walking for him. But that is still a good year away. He is doing good at weight bearing on his arms and he loves to try to craw.
Nathan and Mitchell are doing good, they both have been sick but do pretty good with it. Mitchell will be starting soccor soon. Nathan didn't want to play so it will be a little easier this year for me. Unless he wants to do something else. Who knows. Nick is looking for a job. So pray that something will come up soon. I am finily getting over my cold. Thank goodness.
In April there is going to be a HPE family weekend in Indianapolis. They are looking for donation so family won't have to worry about the cost of rooms and food while there their. Any donations made are tax deductible.
Donations can be sent to:
Kennedy Krieger Institute (KKI) Carter Center
Attn: Elaine Stashinko, PhD
Broadway Tower 100 M
707 N. Broadway
Baltimore, MD 21205
It's very important that in the memo or check references:
HPE Family Weekend/Conference Fund
and if you would like for the money to go to take care of our families share of the weekend add Ryland Jesse Family to the memo.
There will be about 25 families coming to the weekend so any amount will help. Thanks
Summer
Ryland is still not back to him self. They want him off the IV and back to bottle before we go home so maybe tomorrow we will go home. Well better go Grandma Suzi has to get back to Nathan and Mitchell.
Summer
Friday, January 27, 2006 8:38 PM CST
Well we have had a long day and night. It started off at the ER at 8am this morning. Ryland is in the hospital has RSV and has been getting sick so his sodium is off. They are busy up here and we have a roomy (9 month old littlegirl) He is not happy somewhat to do that it took I think 8 times to get a IV started. I am hoping that we get our own room. Well I don't have much time to talk.
Summer
Wednesday, January 11, 2006 9:26 PM CST
It's been almost a month since the last update and alot has happen. Ryland is on a nebulizer twice a day he was on 4 times a day but started to sound better so they put him down to 2 times a day. Ryland is still pretty tight in his legs and is still having muscle spasms at night when trying to fall asleep, so started him on bacfoen. He is also going to start swim therapy next week. He will go once a week for 30 mins. Ryland loves the water so this is going to be great for him and hopefully it will help with his head control. As for Botox injections they are going to wait and see how the next three months go.
Ryland’s TV debut went great. We got more good news last week. Ryland artwork that was in the CMN calendar was choose to be on they 20th anniversary t-shirts. They are so cute and I have worn the shirt 3 times in the past week. He is doing good.
Nathan and Mitchell are doing well in school. Not much is going on with them. Nathan has his first band concert next week.
Nick is still working 2 jobs and Ryland is keeping me busy.
We might be doing the CCHS mall walk but still not sure.
We had a good Christmas and also a great New Years Eve. (It was Nick grandparents 50th wedding ann. and they had a party new years eve.)
Summer
Wednesday, December 14, 2005 7:18 PM CST
Well it's been awhile since the last update. Ryland is doing really good and has been a very happy little 2 year old. He is having fun with all his new toys. He has had a couple doctor app. and everything is looking good but we just need some more weight on him. They have him up to 27 calories an oz with the Soy formula. He is taking the bottle more and is eating babyfood and mashed taders. I don't know if everyone knows this but Ryland is in Childrens Miricle Network calender for next year. We also got some more good news, Ryland painted a Christmas Tree with his feet (mommy helped) and we turned it in for a contest for Childrens Care Hospital and Schools, and Kelo-land. The artwork is for the Christmas Card next year, well Ryland won. He won a $100 saving bond and is going to be on TV. We go in next Tuesday for the taping but I don't know when it will air. I still can't believe it.
He has been so great but we still have the problem with him not sleeping well. I'd rather him be heathly then me getting a good night sleep.
As for the rest of the family, Nathan and Mitchell have been having fun in the snow. They are doing good in school and the only thing that is going on is Mitchell is in BoyScouts. Nick has been busy working 2 jobs and I have been busy being a mom. Hope everyone has a Happy Holidays (just in case I don't update again.)
Summer
Tuesday, November 22, 2005 10:51 PM CST
Ryland's birthday went great. He was in a good mood all day, I think he knew it was his birthday. We had Wiggles deco everywere. Grandma Rose made him a cool Wiggles Cake. He also played in his cake which was not just fun for him but for everyone. It was like he knew what he had to do. He was a mess but I didn't care. He got some pretty cool toys and books. It was a great day and I want to thank everyone that wished him a happy birthday. I can't wait till next year.
Summer
Wednesday, November 9, 2005 9:57 PM CST
Everything is going really good with Ryland. He has a cold but is still a happy kid. We had a good Halloween and Ryland got lots of candy which daddy has eaten most of it. Ryland was a monkey for halloween he looked so cute. The only problems we are having now are with his sleeping but I don't think we are ever going to get that under control.
I can't believe Ryland is going to be 2. If anyone is wanting to get a gift for him he is registed at Toys r us. He is wearing a 2T now but for some shirts he is in a 3T. Not much else to report. He has a couple doctors appt at the end of the but that's about it. Nathan was put on a inhaler for his asmtha. Mitchell is getting over his cold. Everyone has been sick including me which is not easy. Lets just pray that his birthday goes good.
Summer
Sunday, October 30, 2005 7:47 PM CST
Everything is going pretty good with Ryland now. I think we finally figured out what he can and can't eat. I is so nice not having to clean up puk with every feeding. Ryland hasn't gotten sick for three weeks now.
He is drinking from a bottle and eating baby food now during the day. He does a overnight drip with his feeding tube to make up for what he doesn't have during the day. They want him at 32oz a day to keep up with his sodium. He can't eat anything with chunks because he gaggs on it. We were adding rice cereal to his bottles but it was giving him a diaper rash so we just went back to a smaller nipple. He still is not sleeping nights but I am getting use to only 5 hours a sleep a night. He sleeps really good on his belly but we are having problems with his Mic-key button getting in the way. I think I have had to change his beding almost everyday.
He is doing real good in OT and PT and holding stuff for a longer period of time. ST is going good also and he is using his big red button more (communication device that you can record your voice on).
We are hoping for a good winter with him. I don't mind having doc appt. every week just as long as we stay out of the hospital. Other than that health wise he is doing good.
Nathan had a football game at the dome today they were in the top ten for the jr football league. Then tonight we celebrated grandma Rose and grandpa Mike's birthday. Mitchell isn't in any sports but he is in boyscounts. It's nice to have sports over for awhile. I almost made a week without having to go to the doctor but Nathan has been having some problems with allergies and breathing.
Yesterday Ryland sat outside while me and Nick got all the leaves raked up. He loves being outside and I kindof wonder how he will be with the cold and snow. Well better go we have to start the meds. Rylands going to be a Monkey for Halloween.
Summer
Wednesday, October 12, 2005 9:35 PM CDT
Well we started Ryland on a Soy Formula and that is going great. He is doing good with the feedings and is even drinking better from a bottle. He seems to be even sleeping better. Now that he has the Mic-key we are able to put him on his stomach to sleep and still get the 16oz of formula in him. He started rolling over more and now we can't lay him on the couch by himself. He seems to be a little happier now. I still wonder how long the Pediasure was causing him problems.
I also wanted to metion that I got a break this past weekend. My brother works for a Nascar team and he got me, Nathan and Mitchell tickets for the race this past Saturday. My other brother went to. It was a 6 hours car drive, which didn't go over well with the kids. My mom stayed and took care of Ryland. Nick had to work so he didn't go. My brothers and my mom paid for almost everything. She had a little trouble at times but called when every she needed me (about 8 times). We got back at 2am on Sunday and Ryland was awake and very happy to see me. I haven't put him down since. We had lots of fun and it was nice to see my brother. Next year Ryland is coming with. That's about it, oh, Nathan's football team is undefented. They have won all 6 games so now we are going to the play offs.
Oh, Ryland's Children's Miracle Network calenders are in. I am going to try to post the picture up on his website but no promises. The calenders are $10 and if anyone wants one just give me a call. Ryland is the month of Feburary. We went to a lunchoen on Monday for it and everything went great and Ryland never fussed. Not much else to say. We have 3 important appointment in the next month dealing with feedings and his CP.
Summer
Saturday, October 1, 2005 9:05 PM CDT
Hello everyone! Ryland got his Mic-key button put in last week. It's nice to have it but we are still having trouble with his feedings. And since we don't have the internet at home I find it hard to figure out what is wrong, since I can't talk to anyone who know about HPE kids better. Ryland is now up to 23 lbs and is 32 inches long. He is happy but with the feedings not going good he does have his bad times to. He still is not sleeping the best and now has a cold. It's really been busy lastly. Nick's sister Laura had her baby a little boy Anthony born 2 days after Nicks birthday. Nathan is in football so we have that going on and now Boyscouts just started. Well I have to go but I'll try to write more later.
Summer
Saturday, September 10, 2005 2:04 PM CDT
It's been a long time since the last update. Well the only reason I am able to update is because we are in the hospitall again. Ryland was having trouble with his feeding so we went to the doctor and I didn't think we would end up here. His was doing really good with his feeding tube till two weeks ago and when he pulled it out. Ever since they it's been rough. He also is not sleeping very good so I haven't hard much sleep, I'm lucky if I get 4 hours a night this has been going on since the surgery. His has put a little weight on and is really wanting to roll over. He also been sitting and holding his head up good. I don't know how long we are going to be here. It was Mitchell birthday Friday and his party is today. We went through the same thing back in April with Nathan's birthday and Ryland in the Hospital.
I also should add Ryland artwork is going to be in the CMN calender for 2006 the month of Febuary (lover boy) anything the nurse needs us better go. I try to write more later.
Summer
Friday, July 29, 2005 12:38 AM CDT
We are going home. But it was a long night last night, Ryland was awake all night long but I did get a hour of sleep. Now he has been sleeping for the past 4 hours, the stinker. He is doing really good with his feedings just along as he doesn't cry. I am hoping he will sleep better tonight for I need some sleep. I'll try to update as soon as I get a chance to.
Summer
Tuesday, July 26, 2005 6:56 PM CDT
We are in a regular room now and Ryland is up to full strenght PediaSure. He is doing really good but not getting much sleep. It took me 5 hours last night to get him to sleep. If he gets unhappy thats it and their is no making he happy. Sounds like we should be out by the weekend. I am still a little scared about the feeding tube and being home by myself.
Nathan and Mitchell started camp and are just loving it. It nice that they are not having to think about the hospital. As for me I could use about 10 hour of sleep.
Summer
Sunday, July 24, 2005 5:16 PM CDT
Well we are still the PICU. Ryland is doing better and daddy is here now so he is good. They want to watch he closey another night. He is having some pain and I think it is from his stomach but also peeing seems to be hurting. They are running some tests. We will hopefully be in a regular room tomorrow and maybe out of the hospital by Friday. Nathan and Mitchell came up last night and did really good, I thought it might scarce them a little. Ryland likes to have company and I know he wants to go outside he'll look out the widow and stare. He is doing good with feeding and has taken a little pedilyte by bottle. As for me I'm sick of the hospital food and being stuck inside. I know Ryland is missing Grandpa Mikes tree tours.
Summer
Friday, July 22, 2005 4:33 PM CDT
Ryland is still in the PICU. His sodium is off a little but hopefully we will be in a regular room tomorrow. He is still having trouble with the pain but is finally getting some sleep. I was hoping to get him to smile today but that doesn't look like it's going to happen today. Grandpa Mike and Grandma Rose just got here and you could tell he was happy about that.
Ryland had a regular room and we had all are stuff in their but today as I was getting into the shower they informed me that they needed the room for another kid so they packed all our stuff. By the time I was done with the shower they were waiting to clean it so I had to dry my hair with a handdryer in the bathroom in the hall. You would think they would try to make stuff a little less stressfull. After all of that Nick decided to go home take a shower and get a nap in before work but when he went out to the car it was dead. I guess when it rains it pores. That's about it I should get back to his room.
Summer
Wednesday, July 20, 2005 11:30 PM CDT
Ryland is sleeping and had a pretty good day. He never cried at all for the IV and blood draws. He only had to be poked a couple times. He didn't care much for the EEG being put on. He did really good all day with eating and taking his meds. I would like to say that tomorrow will go is good but I know it won't. I will update as soon as I can. Other than that not much. Nathan and Mitchell are at my moms and have had a good time with her. I should get some sleep it is going to be a long day tomorrow.
Summer
Sunday, July 17, 2005 3:00 AM CDT
Well it's been awhile since I've updated but with no computer it's hard. Everything is kind of slowing down with Nathan and Mitchell done with baseball. I've spend the last two night helping at JazzFest for Laney Bear Care. It was lots of fun and nice to get out of the house.
Now for Ryland. We will be going in next week for a feeding tube and a fundo(for his acid reflux). They are also doing a EEG the day before surgery. It was really hard coming to this decision but it will be better for him. It's been a long year already and hopefully after this the whole feeding and medicine thing will get easier. He has been having trouble with sleeping but once he gets to sleep he sleeps good. He still is taking DDAVP, Reglan, Prevacid, Zantac and all are going pretty good. He has been moving more and can roll over faster. He is doing good with all the new equipment but his kid kart is really nice to have. The last time at the doctors he was up to 21 lbs and is 31 1/2 inches.
I will be able to update more in the hospital. We are expecting to be in the hospital till the end of July. If anyone gets a chance you can send Ryland Jesse a email through Sioux Valley Hospital website. Anyway better get some sleep.
Summer
Sunday, June 19, 2005 9:52 PM CDT
Sorry it has been so long since a update but we still dont have a computer. Ryland is doing okay and is enjoying the summertime. We are running alot with Nathan and Mitchell both in baseball. Ryland now has a Kidkart, AFO's, handbraces, bathchair and a stander. I'll just say it is so nice to have all of them. Ryland has a appointment next month to go see a doctor about the feeding tube. He is now over 20lbs but we are having a hard time with his sodium (DI). If he has a feeding tube they we also be doing the Nissen Fund?? (don't know the spelling). It's nice that it we have good weather but Ryland is sweating alot more. Even with the air in the car going he still sweats. We were hoping to have a better car or van by now but money is really tight right now. I am hoping that we can get some nuring care paid for when Ryland gets a feeding tube and maybe I can get a part-time job. I love being at home with Ryland and really don't want to have someone else taking care of him but I don't know what else to do.
Ryland is rolling over more and is getting better at grabbing stuff. If he is on the floor long enough he gets almost all the was across the living room. He still sometimes has trouble with sleeping but is not throwing up to much. We been to the doctor every week for the past month trying to figure out what we wrong with him. He was coughing a gagging alot in the morning and sometimes during the day. They put him on amoicillin and what every he has it cleared up. He also he alergy so he still does it alittle. Anyway better go. Nick wants to go home. I been only able to get on the computer about once every two weeks. We could use a couple extra prays this coming month. I'll try to update when we find out about the surgery.
Summer
Sunday, May 15, 2005 7:12 PM CDT
Sorry it has been so long since a update but we don't have a computer right now. Ryland is doing good but his blood work didn't turn out good on Friday. He goes in next Friday for a checkup. He is a happy baby till you try to give him his meds. We recieved a email about Ryland and got his MRI results back. I would love to say it was good news but it wasn't. He went from mild Semi-Lobar HPE to severe semi-lobar HPE. From the way it sounds it is going to be even harder to get Ryland to do stuff. It's looking like we might end up doing a feeding tube.
As for the rest of the family. Nathan and Mitchell are busy with soccor and baseball. It seem like all we do is run from place to place. School is almost done with so it will get a little easier. Nick is still working alot. I just been doing the mom thing.
Summer
Wednesday, April 27, 2005 2:13 PM CDT
We are going home after a long morning. It took three times to get blood this morning then he threw up after the last time because he was shook up. We are just waiting now for Grandma Rose to come and get us. He is pretty happy now but didn't like the IV coming out I think because of the tape(he's a little hairy). Now we are just praying that the reglan works or we will be back in a month for the feeding tube and Nissan fundoplication.
I won't be able to update to often because we don't have a computer at home at the moment. It will be nice to get everything back to normal again.
Summer
Monday, April 25, 2005 2:39 PM CDT
Ryland's upper GI went good this morning we'll have to wait till later to get all the results back. When they weight him this morning he was 20lbs 4 oz it is so cool to see him over 20 lbs, finally. The only bad part about the day was trying to get his labs drawn, it took three times but he was a trooper. He just isn't bleeding fast enough and they can't get any veins in his arms. I am hoping we won't be in here much longer or I know he will have to get another IV put in and the first one was hard enough. He is happy, he has been playing and kicking.
Nathan's birthday party went great. All but one of his friends showed up so he was happy. The food turned out good and the cake was delicious (Rose made the cake). He got a lot of cool gifts. The only part that was missing was not having Ryland there.
Hopefully my next journal entry will be saying we are going home.
Summer
Monday, April 25, 2005 2:39 PM CDT
Ryland's upper GI went good this morning we'll have to wait till later to get all the results back. When they weight him this morning he was 20lbs 4 oz it is so cool to see him over 20 lbs, finally. The only bad part about the day was trying to get his labs drawn, it took three times but he was a trooper. He just isn't bleeding fast enough and they can't get any veins in his arms. I am hoping we won't be in here much longer or I know he will have to get another IV put in and the first one was hard enough. He is happy, he has been playing and kicking.
Nathan's birthday party went great. All but one of his friends showed up so he was happy. The food turned out good and the cake was delicious (Rose made the cake). He got a lot of cool gifts. The only part that was missing was not having Ryland there.
Hopefully my next journal entry will be saying we are going home.
Summer
Saturday, April 23, 2005 7:32 PM CDT
Well Ryland is in the hospital again. We really aren't sure what is going on. He is happy, except for the blood having to to drawn. He had a doctors appointment Fri and had his blood drawn and everything was high. He also hasn't gained weight yet and is still at 19 lbs 10 oz. They had a hard time getting the IV in because he was so dehydrated. But the good part is he is happy and smiling.
We are still going to have Nathan's Birthday Party sunday. We bought all the food and most of his friends are going to beable to make it.
Hopefully we will be out of here soon. I know they are going to do another upper GI on Monday so we will just have to wait and see what happens.
Summer
Friday, April 15, 2005 3:05 AM CDT
It's been awhile since I have posted anything new about Ryland. We all have been so busy. Ryland went to CCHS and got fitted for leg braces and next week we are doing in to look at standers. He did really good and he loved all of the attention. He got a cold so he has been fussing because of that. It seem to be going around in our family. Lately he has been gagging and pucking up, I don't know if is because of his cold or what. Lets just say it isn't fun cleaning it up. He has a doctor appiontment in about a month so hopefully we can figure out what is going on then.
As for Nathan and Mitchell. They are in Soccer, baseball and boyscout so it has been running back and forth from games and practice. Everything is so busy that if I don't have it down in my calender I won't remember it. Plus the past couple of weeks Ryland has had appointments and so has Mitchell. Mitchell got glasses this week and he really looks grown up. Nathan will be 10 next week on the 20th. (boy I feel old now) (You can send him a card if you want to-PO Box 212, Hartford SD 57033) He isn't having a party. I really wanted to have a party, since he will be TEN but he said that he would rather have the money that would be spend on the party. Lets see we also have the Circus and the Scout-o-Rama this month. I have been so busy that the Easter stuff is still sitting out. Oh, well.
Ryland's benefit went really good and he loved all of the attention. Grandpa Mike, Grandma Rose, Brad and Laura all wore I Love Ryland shirts they were so cute. We are lucky to have so many people out there praying for us. I just want to Thank everyone who came or helped out. It gave us a chance to meet new people and for them to meet Ryland.
THANKS AGAIN!!!
Ryland got a online quilt made for him so make sure you check in out. http://quiltsoflove.com/quilt_2005/ryland_wj/ryland_wj.html
It is cute. Also I will be adding more stuff to his page. I just have to find time to do it. And don't forget to sign his guestbook and give him a hug.
Summer
Sunday, March 27, 2005 8:00 PM CST
Just wanted to let everyone know Ryland had a good visit at CCHS Children’s Care Hospital and Schools. He will be getting a Kid Kart, hand braces and a bath chair. He is going to be fitted for leg braces in a couple weeks. He did so good and never fussed. I know it was hard for him because he was so tired. He looked like such a big boy in the kid kart they had there. Tanya (LBC) came with us. Ryland just loves Tanya and I think it helped him and I know it helped me to have her there. It was hard for me thinking about taking him there and I didn't sleep much the night before but I know this is gong to help Ryland out alot. I sometimes still think I am going to wake and this will all be a dream. Instead of Ryland just laying in bed waiting for me to pick him up, he would be standing up in his crib throwing all his toys out, calling out Mommy. It may take a while but I do have hope that someday he will do that.
Ryland has been in good health, just having problems with his teeth. All four eye teeth are almost through so hopefully his teeth give him a break. He tried Strawberry Pedisure and loved it. He also has been sleeping good and goes to bed like a big boy now, sometimes. His OT and PT are going good and he tries really hard at everything. ST is going good also and he looks forward to seeing Cory.
March has been a busy month with everything. I was hoping April would be less hectic but it is looking busy. Nathan and Mitchell are still in Boy scouts and now they have Soccer, which starts next week. Ryland has four appointments and hopefully that is all. Mitchell has to get glasses and Nathan will be 10 on the 20th of April. Oh, we also have to get Ryland in to see a dentist. Hopefully everything stays going good and we can make it to all the boys soccer games.
Happy Easter!!!!
Summer
Don't forget to sign Ryland's guestbook
Sunday, March 27, 2005 8:00 PM CST
Just wanted to let everyone know Ryland had a good visit at CCHS Children’s Care Hospital and Schools. He will be getting a Kid Kart, hand braces and a bath chair. He is going to be fitted for leg braces in a couple weeks. He did so good and never fussed. I know it was hard for him because he was so tired. He looked like such a big boy in the kid kart they had there. Tanya (LBC) came with us. Ryland just loves Tanya and I think it helped him and I know it helped me to have her there. It was hard for me thinking about taking him there and I didn't sleep much the night before but I know this is gong to help Ryland out alot. I sometimes still think I am going to wake and this will all be a dream. Instead of Ryland just laying in bed waiting for me to pick him up, he would be standing up in his crib throwing all his toys out, calling out Mommy. It may take a while but I do have hope that someday he will do that.
Ryland has been in good health, just having problems with his teeth. All four eye teeth are almost through so hopefully his teeth give him a break. He tried Strawberry Pedisure and loved it. He also has been sleeping good and goes to bed like a big boy now, sometimes. His OT and PT are going good and he tries really hard at everything. ST is going good also and he looks forward to seeing Cory.
March has been a busy month with everything. I was hoping April would be less hectic but it is looking busy. Nathan and Mitchell are still in Boy scouts and now they have Soccer, which starts next week. Ryland has four appointments and hopefully that is all. Mitchell has to get glasses and Nathan will be 10 on the 20th of April. Oh, we also have to get Ryland in to see a dentist. Hopefully everything stays going good and we can make it to all the boys soccer games.
Happy Easter!!!!
Summer
Wednesday, March 23, 2005 2:09 AM CST
Ryland is doing pretty good. He is getting teeth in and it is making him kind of crabby. Other than that he seems pretty heathly. He also is sleeping a little better. He has gone to sleep before midnight about 5 times in the last week, which is really nice for me. But he does get fussy during the day if he is tired.
We went to Sioux Falls today to get his blood taken but when we got home the lab called to tell us that we have to come back because the tests didn't work. So I am thinking we will wait till Thurs so he gets a day to rest. He is so strong that it gives me a workout just having to hold his arm still. He is going to Children's Care Hospital and Schools on Friday to get fitted for braces (hands & legs) and also for a wheel chair. He doesn't do very well in strollers and he looks very uncomfortable when he is in one. Because of his high tone he need hand and leg braces. I am just hoping that Thursday night he goes to bed early.
Also for everyone else- Nathan and Mitchell are looking forwand to having a couple days off from school (I'm not). We are having the Jesse side of the family over to our place for Easter. We are hoping that it is nice outside, we want to have a easter egg hunt but it isn't looking like it. So as for me I am spending the week cleaning and getting stuff ready. Nick works all week so he isn't going to beable to help much. That's about it. I should really good to bed now. !!!!!HAVE A HAPPY EASTER!!!!!
Summer
On the beauty of raising a handicapped child
By Katherine Dowling
The nights can be long and frustrating for we doctors whose shifts fall with regularity in the wee hours. A young lady comes in demanding to know if she is pregnant, then fussing for instant termination when she is found to be. An elderly lady wants a cure for her constipation. An addict arrives, angling for a legal fix.
But every once in a while, like the astronomer whose long nocturnal vigils are rewarded one clear night with the smudge of a new comet on his photography plate, we sometimes encounter the extraordinary. I did one recent night.
I doubt you'd peg the couple as extraordinary if you saw them on the street. She had perhaps once been a beauty. Her brown hair was cropped short and hung limply, and she clearly had put on more weight with each of her pregnancies. His tummy flopped over his belt, and he had a kind smile.
Their child was a young adult based on his birth date, but his brain hadn't really developed much beyond that of a 4-year-old. As he lay on the gurney, occasionally using words only his mother could understand, she calmly told of the recent worsening of his medical problems. When she left the room, he searched for her with the tenacity of an infant, and like an infant, looked into her eyes with pure joy when she returned. Dad waited outside, ready with a smile and a little joke.
They had been caring for their child with love and patience since early infancy, when his problem first began. I suspect that he was a happy young man, in spite of his bad neurological luck. He'd certainly had good luck in his choice of parents.
To me, these parents showed a caliber of heroism that only a few humans are called on to exhibit in a lifetime. They had put aside their own wants, had accepted a child who would never be capable of doing things even the most ordinary of nonhandicapped children could, had given their son enough love and physical help to make his life not just bearable but apparently happy. In the process, they'd
raised a bunch of other children now doing well, and they'd stayed together in a strong and supportive marriage.
Far too often, we assume that a child born with a medical problem is a child whose life is not worth living. We think that parenting such a child is an impossible task.
I'd like to commend those parents who have the courage to raise handicapped children. Whenever I see a mother or a father holding a sickly baby and looking into its eyes with love, each time there's a Down's syndrome child learning from its sibling how to pile blocks on top of each other, I'm awed by the power of the family to make a "less than perfect" life a thing of happiness. And then I know how
lucky I am to be in a profession where every once in a while, I get a glimpse of the best in humanity.
Neither treatable conditions nor permanent handicaps mean people can't live useful, happy lives.
Tuesday, March 15, 2005 0:05 AM CST
Well we got out of the hospital on Sunday. Ryland was doing really good and was happy to be home. I said was in that last sentence because he has a running nose, sneezing and has been kind of fussy all day. I am hoping this cold doesn’t turn into anything. He actually is sleeping now, which is amazing asleep before 1am.
This wasn’t a long stay but we missed a lot over the weekend. Nathan and Mitchell had their Boy Scout Derby races on Saturday. Nick’s parents watched the boys Friday night for us and took them to the race. Nathan got 6th place and Mitchell got 20th, I was bummed I had to miss the race, we worked really hard on the cars. We also were going to have Ryland pictures taken on Sun but had to cancel that. The last time we were going to get them taken was the last time he was in the hospital. We have plans for getting his picture taken this Friday so hopefully nothing happens.
Other than that not much else is going on. Although Friday is going to be busy, Ryland has pictures and has to get some blood drawn. Nathan and Mitchell have a Boy Scout stay over 7pm to 7am and I also get to go. Well till next time.
Summer
********Please take a few minutes to read this*********
This was sent to me by Amy another HPE mom
I have been reading a very uplifting book called SAFE in the
SHEPPERD'S ARMS by Max Lucado pg 73
When I see a flock of sheep I see exactly that. a flock. A rabble of wool. A heard of sheep. All alike. No one different. That’s what I see.
But not so with the shepherd. To him every sheep is different. Every face is special. Every face has a story. And every sheep has a name. The one with the sad eyes, that's Droopy. And the fellow with one ear up and the other down. I call him Oscar. And the small one with the black patch on his leg, he's an orphan with no brothers. I call him Joseph.
The shepherd knows his sheep. He calls them by name.
When we see a crowd, we see exactly that, a crowd. Filling a
stadium or flooding a mall. When we see a crowd, we see people, not persons, but people. A herd of humans. A flock of faces. That’s what we see.
But not so with the Shepherd. Every face is different. Every
face is a story. Every face is a child. Every child has a name. The one with the sad eyes, that's Sally. The old fellow with one eyebrow up and the other down, Harry's his name. And the young man with the limp? He's an orphan with no brothers. I call him Joey.
The Shepherd knows his sheep. He knows each one by name. The
Shepherd knows you. He knows your name. And he will never forget it. " I have written your name on my hand"
(Isa. 49:16)
Quite a thought, isn't it? Your name on God's hand. Your name on God's lips. Maybe you've seen your name in some special places. On an award or diploma or walnut door. Or maybe you've heard your name from some important people -- a coach, a celebrity, a teacher. But to think that your name is on God's hand and on God's lips... my, could it be? Then God Whispers Your Name
" We really are his children."as a result, if something is important to you,it's important to God.
I read this and wanted to share it with all of you. So many of us struggle. (I do) But reading this, it helps to put life in order. All our kids are unique. Their lives were given to us for a purpose. A burden?-I don't feel that way. My back aches some days I worry sometimes. Why? Abby does not worry, she is always peaceful inside. In the middle of the doctor visits, the sickness, the hospital
stays, and tears. I do believe that God has favored each of us, brought us together for a reason.
God has preserved our children with perfection. Inside they all have a peace that we need to remember, and feel.
Amy, Abbys mom
Saturday, March 12, 2005 5:22 PM CST
Just wanted to let everyone know that Ryland was put in the hospital Friday night. He got sick at home and running a fever so we just went to the ER. Hopefully we will get out tonight. We are just waiting for the doctor and been doing that for over 8 hours now. He's doing good and eating I think it was just a 24 hour bug.
Summmer
Saturday, March 5, 2005 12:02 AM CST
Everything is going good. Ryland doesn’t have a cold or anything (knock on wood). He’s eating well but still doesn’t like juice to well. We started him on Melatonin, for his sleeping, and only one of the 4 nights he didn’t sleep good. He also got another tooth in and the other one is breaking thought so now that will make 14. He still is biting his hands but it has gotten better. And we got good news, Ryland qualified for the Disabled Children’s Program. So now he will have Medicad and can go to Childrens Care Hospital and School (CCHS). We got a appointment on the 25 of March to go get him fitted for AFO’s, wheel chair, bath chair and other stuff he made need. Hopefully he sleeps the night before because he will have a long day for all of this.
This week I went out to supper with Tanya (LBC) and Stephanie. Stephanie is another family with LBC. It was nice going out and talking with other people and also just getting out of the house.
Nick changed jobs also this week. Nathan and Mitchell are doing the same stuff. We had the boy scouts Blue and Gold banquet Sunday and we all went, even Ryland. He did really good and didn’t fuss too much. Other than that not much else going on. I bet the next post Ryland will have 16 teeth and hopefully will have put some weight on.
Written by Summer
Tuesday, February 22, 2005 5:35 PM CST
Everything is going good. Ryland is eating good and hopefully the next time we go to the doctor he will have put some weight on. Ryland got some blood drawn on Friday and he really hated it. I think he is working on more teeth. He has 12 now but I have a feeling that in the next month or two he will have 16. He still is biting his hands, so we have to watch he close.
We started giving him baths in the bathtub and he loves it. It isn't easy on me he moves all the time. He got to big for his baby tub and since he can't sit up he kept hitting his head. Hopefully we will get him on the Disable Children's Program and we can get a bath chair for him. We could use some prayers there. If he doesn't qualify for the program I don't know what we are going to do, meaning bills and equipment for him.
He still is jabbering and smiles all the time. If he sees a flash he will smile. He is a ham when it comes to getting his picture taken.
Nathan and Mitchell spent the weekend at Grandma Suzi's. They can't wait for nice weather. I think they would live outside if they could. They don't watch alot of TV and when they do it is with Ryland. Well hopefully we will get past the rest of this winter with no one being sick. Make sure to give Ryland some HUGS!
Wednesday, February 9, 2005 7:25 PM CST
Everything seems to be going okay. Ryland started drinking PediaSure and is doing really good with his eating. He still is only doing about 4oz at a time. Hopefully he will be putting on some weight soon.
The past week he has had a cold and we went in to the doctor Friday to make sure it wasn't influenza. He turned out just to have a cold but we just wanted to make sure. He had to go anyway to get some blood taken. On the way there and back he screamed the whole way, he really doesn't like car rides. He got so worked up that he sweat so bad that I had to change his clothes. The only way to get him to stop screaming is to take him out of the carseat.
In the past couple of days he started moving more and gabbering. He will get all excited and start moving his arms and legs it is so cute. He is getting really good at using his arms to hold him self up. If he got that under contol he might learn how to crawl. Ruth PT and Julie OT have been working alot on that. He also is doing good at holding stuff but if he drops it he really gets mad.
Now if only we could get the sleeping under contol. He does pretty good at staying asleep it is just the getting him to sleep that takes awhile. I don't mind but some nights it is 10 hours of fighting to get him to stay asleep.
So now for the rest of the family. Nathan and Mitchell are doing good. They are going to be playing soccer this spring. They are still doing all the boyscout stuff also. Nathan is looking forward to his 10th birthday but it is still over two months away. They have been pretty upset this year with not having alot of snow. But are looking forward also to be outside playing football again. Nick is has been busy working and also has been sick for almost a week now. As for me, just the same stuff, dishes, laundry, cleaning and taking care of little Pooh Bear (that is what Nick is calling Ryland now). I posted new pictures of Ryland at his Tripod site. http://rylandjesse.tripod.com check them out. That's all for now.
Summer
Friday, January 14, 2005 0:24 AM CST
It’s been awhile since we posted. Christmas went really good and Ryland had lots of fun and even got to open some presents. He is also getting four new teeth in so the past couple of weeks have been drooling and trying to bite everything. Two have broke through now but the other two have a couple of more days. He is eating pretty good and the past two blood tests (For his sodium, DI) have come back really good so now we only have to do them once a month. Since his stomach is slow at emptying we have to feed him 3 oz every 1 to 2 hours and that seems to be working good.
The only problem we are having now is sleeping. It’s midnight and he does not want to sleep at all. He doesn’t have any kind of schedule. Some days he will go to bed at 9 pm and wake up at 8 am but other days he will go to bed at 1 am and wake up 8 am and then take a nap later on. But then again he was up at 5 am the other day. Some nights it will be 8 hours of on and off sleeping. Hopefully it will get better when all the teeth are through.
Nathan and Mitchell are doing good and are glad to have Ryland home again. One thing nice about it being really cold out is that they are in the house helping me out. Ryland loves to play with them.
Also I started watching Kayla (Nick’s little cousin) Mon-Thur so I do keep pretty busy during the day. Working at Kohl’s overnights just wasn’t going to work anymore. Nick works all day so he can’t be up with Ryland all night. I don’t mind being at home but I never get to go out. Well that is about it. Ryland finally fell asleep so I should go put him in his bed.
Summer
Wednesday, December 22, 2004 10:21 PM CST
Well it looks like we get to go home. Just one more night. If all of Rylands labs look good in the morning we will be set free. Ryland had a good day and Santa came a visited. Two weeks is just to many days to be here.
I know more than likely we will have to do this again but hopefully not any time soon. His doctor said if he gets sick it will mess up his sodium and he will have to be put back in the hospital for IV fluids. We will just have to pray that he gains weight and the DDAVP will keep his sodium under control. Thanks everyone for yours prays and Have a Merry Christmas!!!!!
Monday, December 20, 2004 6:01 PM CST
Well Ryland is still in the hospital. He had some more tests today. I wasn't here for them but Nick was and it was hard on him.
I watch Kayla (Nick's little cousin)during the day. I would like to be at the hospital but it does give me time to get stuff done at home. Ryland is eating more but he just has to keep the food down. I am thinking that we are going to be here over Christmas. Ryland has to have a couple good days of eating to be able to go home. Hopefully we will be out of here by Christmas. Thanks everyone for your prays.
Summer
Friday, December 17, 2004 1:35 PM CST
Well not any good news. Ryland can't keep anything down and throws everything up. He was doing so good till his Swallow test on Wed. Since then he hasn't eaten much. They said they did think that we would be going home anytime soon. They want Ryland drinking 30 oz of fluids and be off of the IV before going home. I just want to go home now. He has been pretty happy today. I was able to put him a swing for awhile and he liked it. Other than that he hasn't been himself, he's crabby and don't want to be put down. I know he would rather be at home also. I don't want to be here over Christmas. He's smiling so that makes me happy but you can tell he wants stuff to eat and drink. It’s just been such a long week. I just want to be at home enjoys Christmas stuff. Hopefully Santa will bring my gift early, wanting to be out of here. Thanks everyone for praying for Ryland. Hopefully the next time I write we will be at home
Summer
Sunday, December 12, 2004 8:25 PM CST
Ryland was put in PICU Fri night. He started to have seizures. They think it was because that his sodium level dropped to fast. He was running a fever and wasn’t eating. He now has gotten down some water but formula is still not working out that great. They said that once his sodium is back to normal and stable maybe we could get out of ICU and back to a regular room. But they want him eating and not having a fever also. He doesn’t like this at all. Every time we get him to sleep they come it and take blood. He did swing a little tonight in the swing and he liked that for awhile.
I wanted to say thank you for everyone who has visited, hopefully we are out of hear real soon.
Summer
Friday, December 10, 2004 12:13 AM CST
Ryland is in the hospital. We went to the doctor on Wed and they thought it would be best to put him in the hospital and do some tests. Will write more later if we find something more out. They think it might be his sodium levels are to high. He is in Room 1261 at Sioux Valley.
Tuesday, December 7, 2004 0:16 AM CST
We had a fun weekend. Ryland my mom and myself went down to Omaha to meet some other family with kids with HPE. We stopped by and saw some family in Winnebago. Ryland was okay till about the last hour and half of the trip. He screamed the rest of the way down to Omaha. We met Will he is 4 and his mom is Kris we had breakfast with them on Friday. Friday we went out to supper with Renee and the family and her daughter is Dakota and she is 10. It was very helpfully meeting them and I got lots more information on what I should be asking the doctors. We did a little Christmas shopping and Ryland got to see Santa. He wasn’t scared at all and just sat in his lap. I think being away from daddy was hard on him he didn’t have an easy time falling asleep and didn’t eat well either. On the way back we stopped in Winnebago again and visited with my dad, Ryland’s grandpa. Everything seemed to be going okay when we left but after Sioux City he started crying again. Lets just say it was a very looong trip home. As soon as we did get home and he was able to see daddy he was fine. About an hour after getting home he was fast asleep in daddy’s arms. He slept all night long and didn’t wake up till 9:30. I guess we won’t be taking any long trips any time soon, unless we can figure something out. Other than that everything is going good with ST, PT, and OT. I am looking forward to Christmas being over. I like Christmas but it’s just so much stuff goes on and everything gets be hide. I started to watch Ryland’s little cousin Kayla now and for it being the first day it went pretty well. I think Ryland will like having someone else to look at and talk to.
Written by Summer
Tuesday, November 30, 2004 3:14 PM CST
I just can’t believe that it is almost December. I still haven’t done much shopping. We did get the Christmas stuff out. On Sunday we went and cut down a tree. Nick didn’t most of the work. I was hoping to get some good pictures of Ryland looking at the tree but he decided to take a nap, the whole time we were cutting down trees. Grandpa Mike and Grandma Rose also got their tree. Brad and Laura cut down one to. We went over to Mike and Rose’s and decorated their tree and had supper. We do this every year. We had a little problem with it standing up. It was a fun night, till we got home and I saw our tree. It is Huge it takes up most of the living room. Oh well, it is our first real tree it caused some problems but we won’t every forget it.
Thanksgiving went good. Ryland had a little bit of everything. He liked the buns most of all. We went over to Grandpa Mike and Grandma Rose’s place. Ryland played most of the time and was a great baby that day. He is usually pretty good as long as he has a nap and something to eat. You know how Thanksgiving is, you eat to much and can’t do much else.
Not much has been going on with Ryland. We are trying to feed him more so he puts on some weight. Hopefully we will be hearing back from the Carter Centers about Ryland’s MRI and see if they found anything else out. We know what he has but knowing what parts of his brain are affected, would be helpful in knowing what else if anything can be done.
Mommy’s Thoughts
It is still hard for to talk about what he has. It is funny how much can change in one years time. One year ago all I thought about was Ryland getting into all the Christmas stuff and how many times would we have to pick up the tree or how many ornaments would he break. Or how cute he would look trying to walk through the snow for the first time. With Nathan and Mitchell I would get so mad when they would break or get into the Christmas stuff. But now, I would just love to see Ryland walking over to the tree and taking down the ornaments. That is my goal for Ryland, to have some broken ornament next year. His first birthday had to have been the second hardest day for me since he was born (the first would be the day we found out about his HPE). I guess I still think that one of these days I’ll wake up and this will all be a dream.
That's all for now. I am going to Omaha with my mom and Ryland to visit with some other families that have kids with HPE. We will be leaving Thur. Hopefully the weather stays nice.
Tuesday, November 23, 2004 1:16 AM CST
Ryland is One year old now. Ryland and the whole family had fun for his first birthday. We did a little celebrating on Fri. We had a meeting with Birth to Three and Ryland's ST, OT and PT to discuss how he has been doing and what are we going to be doing next. We decided to wait and put off a review for Ryland for now to see if he would qualify for prolonged care. He more than likely would qualify and if he did he would lose Cory his ST. He does so good with Cory and he just lights up when he comes over. So for now we are going to wait and see.
On Saturday we went out to eat with Grandpa Mike, Grandma Rose, uncle Brad and aunt Laura. Then we all came back and Ryland opened his presents. We also had cake and ice cream. He got lots of books and a couple toys. Ryland just loves books. He enjoyed the bows and wrapping paper more. Mommy and Daddy got Ryland a walker and a reclining high chair to sit in when we go places (We have such a hard time going places because he can't sit in a shopping carts or in high chairs that they have in restaurants, hopefully this chair works out.)
He had a doctors appointment Monday. He hasn't gained weight but got 2inchs longer. His head hasn't gotten any bigger either. The doctor wants us to try to feed him more and see if that helps. We have to go back in a couple of weeks to weight him again and see if he gained any. Right now he only has 4 to 6 oz of formula when he has a bottle he sometimes wants more but it usally ends up on mommy or daddy. He also wants us to feed him more food. So hopefully this works out and he doesn't puke it back up. If he continues to urp up alot they might have to do some more tests. It's sometimes a long process with feeding him and he will take 30 mins to eat 4oz. That about it. Oh, he got a shot but did really good and hardly cried. His ears also looked good (no ear infections so far).
Tonight it was so funny, I tried to get him to sleep and he just struggled so much. He did not want to sleep or so I thought. As soon as Daddy came home and picked him up and laid him on his lap, he was out. He was just waiting for Daddy. After that he didn't even make a peep and went right to sleep. Hopefully it stays that way. Nathan and Mitchell are doing good and Nathan's finger is much better. I am still working on the bigger birthday party for Ryland hopefully Dec 12th will be the day. Till next time.
Summer A.K.A Mommy
Sunday, November 14, 2004 9:40 AM CST
It has been a pretty busy week. I decided to work 5 days this week, not doing that again unless I have someone to watch Ryland during the day. It would have not been to bad but we had to bring Nathan to acute care Wed. night, he hurt his finger playing football. Of course he didn't tell anyone at school that he got hurt and waited till he got home. Luckly Ryland had a really good week. He has been a good little Pupdog. I finally got over my cold or whatever it was I had. No one else got sick so I don't know what it was. Nick has been busy working (All the Time). We haven't spend more than an hour together all week. I know Ryland misses his Daddy. Nathan and Mitchell had the Boy Scouts Carnival on Sat. I spend from 10 to 2:30 helping out but it was fun. Grandpa Mike came and picked up Ryland since daddy had to work and I couldn't take care of him plus run the cake walk and Bingo. Ryland spend about an hour at the carnival with Mike. He just loves all the attention and the noises. I guess he went back to Grandpa Mikes and Grandma Roses place and fell asleep. We went to Sioux Falls later on that night and droped off Grandma Suzi popcorn order. So he got lots of love that day. We also had to stop by Kohls and get Ryland a new Monkey outfit, for his birthday. I love monkeys but Ryland loves Puppies. It has really been such good week, hopefully the next week goes good since he will be turning one on Fri the 19th. We are planning his birthday for sometime in Dec. not sure yet.
Written by Summer (The Mommy)
Friday, November 5, 2004 8:28 AM CST
I’ll just start off by telling you that Halloween went great and Ryland had lot of fun trick or treating. It was a perfect night and Ryland looked so cute in his puppy costume. Nathan was a vampire and Mitchell was the grim reaper. They went to a lot of houses and Ryland went to about 10 or so. He was actually getting two of everything because everyone said he was so cute. And of course Ryland had make things a little more difficult by going poopy about two blocks away from the house as we were starting out. I think that he that planned. It was his little Halloween joke to me and daddy.
I've been sick since Friday so I haven't gotten a chance to update stuff. I also been working more. I still don't feel the best by you know mommy aren't allowed to be sick.
The good part is that Ryland hasen't gotten anything.
He did really good in ST and was jabbering the whole time Cory was here. In OT and PT that was a little more different, he likes some stuff that they do but some stuff he doesn't like and when he doesn't like something he lets you know. He kind of has been fussing lately and doesn't want to be put down, At All. I don't know if he is working on a tooth or what it is. So that mean no sleep for me. Nathan and Mitchell had Thur and Fri off of school for confences. They both are doing really good in school and there teachers just love them. Nathan is really quiet in class and Mitchell is really polite. It is nice to see that they behave in school at least. Other then that not much is going on.
Ryland's Bithday is coming up. We decided to wait on having a birthday party since so many people have been sick. I think we are going to do a year and a half birthday party. It will be nicer out and maybe we can have it outside.
ABOUT RYLANDS BIRTHDAY: I think for now we are just going to have Birthday Card fundraisers. He can't play with toys that normal one year olds would play with but it would be nice to get him some special needs toys. We are also looking into different equipment that would help him in making life a little easier for us and him. Like a bath chair, a stander and maybe a walker. They also have switches that you can put a electical toys, so all they have to do is hit the right switch. Their are so many different things that we would love to get for him. Make sure you sign the guest book and wish him a Happy Birhtday!
Journal Entry Written by Summer
Saturday, October 23, 2004 3:42 AM CDT
Ryland has been doing really good and got over his stuffy nose. I actually was doing this earlier and had Ryland in my lap and he hit the key board and turned off the internet so now I am writing it all over. Little stinker. Then he got fussy so I had to go put him to bed.
Ryland had his flu shot today and did really good and hardly cried. I was so surprised he did so good. We spent the day in Sioux Falls and did a little shopping. It is Grandpa Mike and Grandma Rose's Birthday this following week. They are coming over Saturday to have supper with all of us and also Brad and Laura (Ryland uncle and Aunt).
PT and ST have been going really good and every week they say he is getting better little by little. Anything that he does different is a big accomplishment.
Grandpa Mike and Grandma Rose brought over a new High Chair tonight and Ryland just loved it. He sat in it for over a hour batting his toys around the tray. He sits in it so good, I wish every place we went had a high chair like this.
Nathan and Mitchell are doing good and can't wait till Halloween. They are looking forward to going out and they want Ryland with them for getting candy. Ryland is going to be a puppy, Mitchell is going to be the Grim Reaper and I don't know what Nathan is going to be yet. They have a lot going on with Boy Scouts here in the next month so we will be busy, plus Ryland will be having his fist birthday also. Well that is about all for now. Hope everone gets a chance to sign his guest book.
Summer
Thursday, October 14, 2004 8:50 AM CDT
Well not much with Ryland has been going on. He has a stuffy nose so we hope that doesn't lead to anything. Everyone keeps saying that Ryland has grown a lot in the past couple of weeks. He had PT on Monday, Ruth and Judy didn't all sorts of stuff with him but he enjoys being played with. He was up almost all night on Tuesday so he was really sleepy for Cory his ST on Wed.
Ryland's cosin Kayla is in the hospital and has had a lot going on. She had surgery Wed. on her brain, up at the Childrens Hospital in the cities. Kayla has been in and out of the hospital for the past month. So she could use a couple extra prays and hopefully everything will be back to normal for Christmas.
Since it has gotten colder old, Ryland can't go on tree tours with grandpa. For anyone that isn't sure what a tree tour is, Ryland's grandpa Mike takes him out side and goes and shows him all the trees and tells him what kind of tree it is.
Ryland's brothers Nathan and Mitchell are doing good. Not much is going on with them. They are still selling boy scout popcorn and they like being in Boy Scouts. Hopefully we can get them into some sport over the winter also. Well that's about all that I can think of to write. Ryland is sleeping right now so that's the only reason I am able to get this done.
Saturday, October 9, 2004 2:21 AM CDT
Just started this new web page. You can still view his other web site at http://rylandjesse.tripod.com We been having problems updating the other site.
Everything has been going really good with Ryland and we are lucky to have him in good health. At speech the other day he said GO or it sounded alot like GO. Cory the ST has this chicken that does the chicken dance he would wait for Ryland to make a sound and then start it, then shut it off again. He keep saying Go and Ryland would make noise and a couple of those times it sounded just like Go. So now I get to right down in his baby book that his first word was Go. Maybe that is good, that his first word was GO, maybe that is a sign that he will always Go and nothing going to stop this little Pupdog. Grandma Rose calls Ryland her little Pupdog and it just fits. We went to the West Central football game tonight and it was just a great night for football. Ryland loves the lights and the noise. This was his second football game this year. The first one we should have gone we ended up in the ER instead. He has been sleeping better but only if me or Nick are holding him. With his high tone he sometimes gets rigid and doesn't hold still while sleeping. He only sleeps good on his stomach. We have tried laying him on his back but he gets to scared and his arms will flare up. He has been eating really good and is drinking more than 4 oz at a time now. He can suck down 6 oz of cereal in the morning and follow it with a 4 oz bottle. He eats about every 3 hours and I swear he has gained 2 lbs in this past week. Nathan and Mitchell have been doing good and now they Boy Scouts and are selling popcorn. Nick has been working hard and I just been doing the normal stuff that moms do. (Info on Ryland Holoprosencephaly can still be found his other web site.)
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