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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Tuesday, November 30, 2010

Who knew a Christmas tree box would do all this?

It has been really hard to get Madi to want to practice walking.  She was struggling with it and was giving up, not really trying because it was hard.  She just could not quite figure it out.  I think part of the problem was that she was still trying to shuffle, like she did in her stander.  We'd been practicing on and off, but not as much as we should have been, as I didn't want to push her.  Yesterday I decided to put her chair out of sight and just tell her it was time to work on walking.  She and I practiced quite a bit, and then she asked to get in the Christmas tree box.  Conner had been playing in it and she wanted a turn.  I put her in and noticed that she had an easier time with walking.  She was taking a few steps on her own, without any help/support.  It's kind of crazy too because I had been fighting and fighting to not get a fake tree.  Finally I gave in this year and we bought one from Michaels.  Who would have guessed that God would have a plan for that silly box?  I called Tami, her physical therapist, and told her about it so she could see her walk in it during her session today (I had to help in Conner's class so my mom was going to be here with her for therapy).  Tami worked with her again today in it and I came home to this....






I had been down the last few days because I felt like I was failing at helping her walk and I did not know what else to try.  Who would have known God would give us such a simple answer!  I am so very proud of my little girl.  It is like the light bulb finally went off for her, and now she understands how to move her body to make walking work.  She is such a smart little cookie!  Now we are faced with the task of trying to figure out how to make her something like the box out of PVC pipe, wood, hand railing, or something of the sort so that she can use it to practice once this box falls apart (which it is quickly doing).  With my dad's help, though, we'll figure it out.  Way to go Madi!

Wednesday, November 24, 2010

Tonight I was thinking....

Tonight the kids and I were watching a book on storyline online before bed.  While we were sitting there, I looked over and noticed that Madi was slowly leaning over towards Conner, and at the same time, reaching to hold his hand.  Of course, boys cannot hold hands with their sisters, I mean, that's so not cool, so he pretended that he didn't notice, but did let her hold his hand.  Madi put her head on his shoulder, and I saw Conner give a little smile.  Conner is a great brother, he really is.  He is always very concerned about Madi and is always wanting to know that the doctors will not hurt her and that she will be ok.  Yes, they have their moments, but he is so sweet and gentle with her.  There are so many times he asks her if she is ok and tells her, "It's ok, Madi, I'm right here".  He gives her little hugs and kisses when he thinks no one is looking and sometimes he even lets her wear his spiderman costume or play with his favorite toy.  He seems so much more compassionate than many other kids his age.  I always knew that Madi would make me stronger and a better person, but I did not realize how much she would shape who Conner becomes.  I might be a bit biased, and I know he is only 3, but I really think that God is going to use him in a big way, and that Madi will be a big part of the man he becomes.


Monday, November 22, 2010

We're Baaaaaaaaaaaaaaaaaaaaaaaaack

We're back from California and had an awesome time!!  We did Disneyland, Legoland, and hung out at the beach.  Madi was not too fond of the rides at the parks, but thankfully we had brought her wheelchair and she had a blast zooming around and people-watching.  We knew Disney would be busy, especially on the weekend, and we were really unsure about bringing her chair, but it turned out great!  She did love "It's a Small World", but that was about it.  Vacation was fun, but being home is pretty awesome too!  Here are a few (ok, ok, a TON) of pictures from our trip.




Madi LOVED Minnie Mouse!


She also loved trying on hats






Someone made these adorable little gloves for her.  I have a hard time getting her to keep them on, but she is starting to ask for them, finally!

My favorite picture of us together.


Finally giving in and sleeping



Meeting my birth dad and his wife for the first time, very cool!


Dinner with my birth mom and half brother Nathan.  I got to meet him for the first time!  FUN!







He loves writing his name.... on everything!


Oh, I forgot, she also loved the train in Lego Land... the ONE ride she could go on!  


A swing on the beach... Madi's version of Heaven!


Conner's first bubble gum icecream.



I love this picture of David and Madi


Look at the seals in the background!


If you want to see more pictures, I made a little book for the kids.  I had a free book credit, and it sounded like fun.  Here's a link http://share.shutterfly.com/share/received/welcome.sfly?fid=704104a3321218095b2f2841c4d4a52e&sid=0AYtmTFm2ctmbio

And off topic but whenever I post, Amazon suggests I advertize with this CD.  I have no clue what it is, but it is called "The Gift" and I always find it so fitting, because Madi is such an amazing gift!

Friday, November 19, 2010

We are LOVING these "underwear"

Madi is only 2, so wearing diapers really is not a big deal for her.  Most kiddos her age still do, regardless of if they have a disability or not.  Madi was really wanted big kid underwear, like her brother, though, and frequently uses the potty, even though she is so young.  Since she is cathed 4 times a day, she really does not urinate very much any more, so I wanted to get something more grown-up for her.  I stumbled across some great training pants that look like underwear.  They start at size 18 months and go up to 5T, I believe.  I bought one pair just to try them and loved them right away.  Madi loves them too, which is even more important!  They are not waterproof, but the nice thing about that is that you don't get that "crunch" you do with PUL fabric and it makes them look even more like underwear.  There are lots of different prints you can pick from and if you message the seller, she is able to customize them for you.  I got them a little bit bigger in the rise (the part that goes from the top of one side (by your belly button) to the top of the other (at the top of your bum) and had her add in an extra layer of absorbency so they could be worn at night.  They are a little more bulky this way, but still very trim.  She split the absorbency so that they would dry faster, and it really is a great design.  Her daytime trainers are really trim under clothes, especially considering how absorbent they are.  I had her make extra snap-in liners so that if Madi pees or poos a little in them, I can just change the snap-in liner instead of the whole pair.  It makes it a little bit cheaper this way.  When she outgrows her daytime ones, I am going to switch to just these and have 1 smaller and 1 thicker liner for each pair.  Madi really loves being in underwear and calls these her "apples" because the first pair we got was of apples.  Now they are all just apples, even when they aren't :).  Wendy, the owner of The Pampered Tush, was really sweet and awesome to work with and I know we will be back!  Here is a link to her website http://hyenacart.com/ThePamperedTush/ .  Just make sure you want to order any, you order "trainers" not underwear, as those have no absorbency.  She makes boys and girls.  Oh, and I get no kick-backs for posting this, we just really love them and I thought someone out there may be searching for something like this.  Here's a picture of sweet Madi showing off her underwear.  She loves getting in to the corn starch!!


http://hyenacart.com/ThePamperedTush/

Thursday, November 11, 2010

One More Check-Up... Madi's Looking Good!


Today we went to Dr. Segal, Madi's orthopedic surgeon, and he said she is looking great!  Her left leg is a little tighter than her right, like it always is, so we need to keep working on standing and walking, but other than that, her feet  and hips are good for walking :).  It's been so hard to get her to want to stand up and try to walk since her wheelchair is just faster, but we are working on it.  I don't want to push her, but at the same time, I know how important weight bearing is, so I try my best to make it fun!  Dr. Segal is a nice guy and he always sits down and chats with me for a bit after he is done checking out Madi.  Today he and I had a nice discussion about stem cells and the such.  He is going to China next year and is going to give me the real scoop then so we can decide if it is something we want to persue for Madi.  I was a bit dissapointed because I was really hoping Madi could one day get the nerve re-routing surgery to help her urinate, but turns out, there is some major stuff going on and lets just say that the research one man was publishing may not be valid.  There are some studies going on in the US, though, so I am still holding on to hope that they will figure out something that will help Madi void without being cathed. 

Oh, and just to reiterate that you should always ask "why", I have a story from today.  When I walked in with Madi (well, I should say, when Conner and I walked in and when Madi zoomed in impressing everyone within sight), the nurse told me Madi needed a hip x-ray and asked me if that was ok.  I told her "I guess so", but after thinking about it, asked why she needed one, since Dr. Segal had once told me that he did not really care if her hips were fully in or not (he explained why and it made sense).  She got all huffy with me and said she asked me if it was ok and I had said yes.  I told her that when she had asked me, I hadn't had time to think about it, and that all I want to know is why she needs one before we get one.  Though we don't pay for her x-rays, someone does, and it seemed like a waste of money.  Not to mention that there is of course some radiation with x-rays and even if it is small, I don't want it for no reason.  She told me I could talk to Dr. Segal about it and then have it done.  Turns out Dr. Segal didn't want it done, so we would have upset Madi and wasted everyone's time and money for no reason.  I'm glad I asked why!

Tomorrow we are off to Disneyland!  We're bringing Madi's little pink hot rod (wheelchair) and I know she'll have a blast crusing around.  Conner is so excited and was totally off the wall today.  Wish us luck with the car trip, and we'll update with pictures when we are home!!  WOO HOOOO!

Wednesday, November 10, 2010

Happy Birthday Beautiful Girl!!

Tomorrow my amazing girl turns two!  Can you believe it?!?!?!  We celebrated early on Sunday because we will be headed out of town Friday.  She loved her birthday party and has already asked multiple times for "more birthday".  Madi is such a enourmous gift to us, and we are so thankful we were blessed with her.  Here are some pictures from her big day.  She picked a 'kitty' theme.













Monday, November 8, 2010

To all my prayer warriors....

A very special little girl is going through surgery right now for a spinal shunt and detethering.  Surgery is planned to take 3-4 hours!  Please pray for Ciaran (here's her blog http://cjrileyspage.blogspot.com/) as she goes through this.  Pray that God will guide Dr. Moss's hand and that he will protect Ciaran.  Pray for minimal pain and a quick recovery.  Pray that the shunt works correctly and that it stays working and infection free.  Pray that this detethering works and that she won't need another.  She has had too many already!  Thank you for your prayers!

Update- She is out safely!  YEAH!

Sunday, November 7, 2010

My Hospital Stay Tips

I've been meaning to write this for some time, but just never seem to actually sit down and do it.  I thought some people might find it helpful to have a good set of hospital stay tips, in case they had a baby/toddler/child that is facing their first hospital stay.  Please feel free to leave a comment with your own tips. 



1- If possible, tour the hospital your child will be staying at.  Talk to the doctors and nurses, find out where things are, and ask any questions you need feel will help you be prepared.  Find out how meals and the such work, where the bathrooms, showers, and washing machines are, and all that good stuff. 

2- This is one I really can't stress enough.  If at all possible, stay with your child  day and night.  I know that this is not doable for everyone, and my heart really goes out to those that want to be there and just cannot find any way to make it work, but I really feel this is huge for your child.  The nurses will be great with your child.  They will take good care of your child.  However, they usually have at least 2 children to take care of and they just cannot give your child what you can.  They cannot give them the same amount of hugs, skin-to-skin contact, feelings of safety, and reassurance that you can.  When I was in the NICU with Madi, the first night they did not have a private room for us so I stayed in a separate room within the NICU designed for parents to stay with their babies the night before they took them home.  The plan was they would come to get me when they needed me.  I regret that decision all the time, though I cannot change it.  Madi was upset and instead of coming to get me, they decided she needed pain medication (she may have, I'm not saying that, but she might have just needed momma too), and gave her morphine.  They gave it too fast, though, and she stopped breathing (or her heart stopped, I'm really not too sure, it's all kind of hazy right now).  They came and got me after they got everything under control, but I should have been there in the first place.  I still cannot imagine what it would have felt like if I wasn't, and the stuff they gave her to counteract the morphine did not work.  I can't even think about that.  I was in such a daze because I had just given birth and all that good stuff, and I should have just insisted I slept in a chair by her bed.  They moved us to a private room the next day and I clearly remember the set of twins across from us.  One was going to get to go home, but one was not, so they separated them to rooms side-by-side.  The parents would come for an hour or two and hold them (give them "friendly touch" as they called it) and then leave.  I felt so bad for the baby that was going to have to stay, though.  They would turn his lights on max during the night and poke and prod him all night.  He would cry this pathetic little cry, and no one was there to ask them to turn down the lights, or to do his testing during the day and let his little body rest and heal at night.  They did all his blood transfusions and everything and never let him rest.  How was he supposed to get better?  In Madi and my second stay in the PICU, a nurse was telling me one of the hardest things she had to do was let the babies cry because she had to attend to her other children too, as well as doing her computer logging and the such.  Beyond all that, I really think that the reason we got out so quickly the first time (5 days instead of the normal 2 weeks) is because I was there with Madi and she got so much skin-to-skin time.  I was nursing her and holding her just 2 hours after her first big surgery to close her back and put in her first shunt.  I know it's not typical, but I really think it helped.  The fact of the matter is no one loves your child as much as you, and no one will advocate for them like you will.  If there is any possible way to be there, I really believe it is best.  If you cannot be there, maybe you have friends or family or people from Church that can take shifts.  If none of that is possible, make best friends with child life.  They can get volunteers in your child's room as much as possible so they are not alone.



3- Do not be afraid to ask questions and speak up.  Just because they usually do something at a particular time or in a particular way does not mean it has to be done that way.  They always wanted to bathe and weigh Madi at 2 or 3 am because it was their slow time.  She was trying to sleep, though, and would get very upset.  I asked if I could just give her baths and weigh her in the morning myself, and they were fine with that.  Some things have to be a certain way, but not everything does, and it doesn't hurt to ask.  I also found it helpful to bring a laptop with me.  Not only did it help me pass the time, but I also could use it to look up information if I was confused on something.  For example, they wanted Madi to go NPO (nothing by mouth) for 6 hours.  For a breastfed baby, though, most hospitals only require 2-4 hours.  I looked on the La Leche League website, as well as a few others, saw that 6 hours was not necessary, talked to the doctor about it, and they happily agreed to 4 hours.  They just hadn't realized Madi was nursing.  Of course you have to be careful because there is LOTS of bad information out there on the Internet, but it is nice to be able to research a bit more if you feel you need to.

4- The hospital can be a noisy place!  Bring a fan or a boom box for some white noise.  We always bring our CD player/boom box (do they even call them that any more, or am I just really showing my age right there???) with a nice relaxing classical CD, then put it on "repeat" all night long.  It really changed the atmosphere of the room and helped us both get good sleep at night.

5- If your little one sleeps in bed with you at home, you can request that they let you sleep together at the hospital too.  We always have to sign a waver that says we will not sue them if Madi falls out of bed, but they have no problem with it.  Instead of a crib, they would bring us a "big bed" along with some blankets to roll up and put on both sides of the bed, next to the railing, to close up any gaps.  Even if you do not sleep together at home, sometimes it is nice to be able to be close.  Many times after surgery, kiddos just need to be closer.  I did not realize you could do this until a few nights in to our first PICU stay.  Madi had just gotten out of surgery and would not let me put her down.  I kept falling asleep sitting up on the couch with her, which they frown upon (they will take the baby from you and put them in the crib as they say it is a "fall hazard").  I told the nurse that I just wanted to be able to sleep next to Madi so she was comfortable and she said, "Oh!  You can do that!  Hold on!"  She came back with my waver to sign and a big bed for us.  It was awesome!!


6- Do not forget what you need to take care of yourself.  Bring everything you need to keep yourself fresh, like a toothbrush, toothpaste, change of clothes, deodorant, and things like that, but also things to keep you upbeat.  Bring movies, your laptop if you have one (you can even request one at some hospitals), music to listen to, some snacks, a water bottle, books and/or magazines, games if you have games you like, and pictures that your other children drew for you to hang up in the room as well as pictures of your other children (Conner was not even 2 when Madi and I had the most hospital time, it was rough!!) to name a few.  Chocolate, of course, is always pretty necessary too, as is money for food (unless you are nursing and get it free)

7- If you have a baby, and there is any way to nurse them or pump and give them your milk, do it!  You can also ask for donated milk instead of formula if you need to supplement (I supplemented with donated milk by using a supplemental nurser system until my milk came in).  Breastmilk is amazing and contains all kinds of crazy and cool stuff like DNA, Immunoglobulins (antibodies), Lysozyme (antibacterial), fatty acids, probiotics (or is that prebiotics, I can't remember), and so many other great things.  It also helps by lowering the SIDS rate, decrease the risk of some childhood cancers, and so much more.  Plus, it's free, and I like free.  There are a few things to know if you are nursing/pumping.  You can ask for a hospital-grade pump to have in the room.  I needed to pump every time Madi went NPO and many times after surgery when she wasn't feeling good, and it was so nice having a pump right there in our room.  They also gave me labels to stick on the bottles of milk so they could freeze or refrigerate it for me.  I got many comments about all the milk I had in their freezer (which I was later able to donate to a baby in need.... pretty cool!).  Another really important thing to know is you might be able to eat for free!  Since your insurance company does not have to pay for formula, they usually will pay for your meals.  It was so nice to get to pick up the phone, tell them I was a nursing mom, order food, and have it delivered to the room for free!  Some hospitals give tickets for food, some deliver it, some do both, but either way, you will be well fed :).  I found it helpful to bring my "hooter hider" to pump under, since you never really know who will walk in your room or when.  The doctors thought Madi was adorable and would come and watch us through our window and talk about how cute she was.  I thought it was super sweet, but I would have felt a little awkward about it had they been watching me in action.  I know they see it a lot, and think nothing of it, but I liked my privacy. 

 


8- If you find your child wants/needs to be held a lot, it can be really helpful to bring a good carrier, such as an Ergo or Beco, to hold them in.  If you have a wee little one, a good soft wrap, like a gypsymama or moby, works really good too.  This will give you free hands to do whatever you need, but will also let you keep your little one close.  You do have to watch for wires and the such, but it is very doable!

9- I liked having a pre-written care plan for Madi that the nurses could read before they started their shift.  When I had Madi I knew that we would be stuck at different hospitals for a little while.  Thankfully it was only a few hours, but I sent David with Madi and my care plan before I could be there.  The nurses said they had never seen one before, but were excited about it and they all made sure they read it and helped us out.  I put things in there like the fact that our goal was to breastfeed and to please help us do whatever we needed to make that possible, that I wanted to nurse on demand, to please keep the lights dim at night, to test as much as they could during the day so that we could rest at night, and things like that.  They nurses were very respectful and helpful.  Of course, you can request something and that does not mean it will be able to happen, but it doesn't hurt to ask :).  The important thing is just to know that your plan may have to change, and that's ok.

10- If you do not like a nurse, ask for a new one!  I thankfully never had to do this, but you can.  If you like a nurse a lot, ask for them again.  I did this a lot.  It really helped to have the same nurses as many days/nights in a row as we could. 

11- If you have an older child, bring games, postcards, their favorite lovies, and anything else that will make them comfortable.  I have not had a stay with an older child yet, since Madi is not quite 2 yet, so maybe some other more experienced moms can chime in with advice here.

12- Visitors are always nice, but it can be hard when your little one is in and out of cat scans and x-rays and all that fun stuff.  I found it helpful to just have them text with a time range that they wanted to come, and I'd text back with what time would work.  Sometimes I had to have them wait a few minutes, but it was so nice to have people to talk to and interact with.  The hospital can be so lonely!  I remember when Madi and I were there for almost 3 weeks and I was so homesick.  Having company made my day!  Don't be afraid to ask for visitors, but also do not be afraid to say "no" if you just need some time to yourself, or if your little one is under the weather and needs things quiet.


13- Updating everyone can be frustrating.  Everyone that loves you and your child will be calling to see how they are doing.  It is a good thing, don't get me wrong.  I always really appreciated that people took the time to call and that they cared enough to do so.  It was hard, though, when I had a crying baby or doctors to talk to, or had testing going on, or whatever, and obviously people do not know your schedule or circumstances.  I found it helpful to have a blog that people could read for updates (well, this blog ;)), to have a "go to" person they could call that I kept updated, to have people e-mail so that I could get back to them when I had time, and to send out mass e-mails every so often of what was going on and what people could be praying for.  It is awesome to have so many people loving your child and praying for them!

14- Do something special for your husband and little ones back at home.  I missed Conner so so so bad when we were away.  I had never been away from him before, he was still nursing, he still slept in bed with me, and wow was it hard to be away!!  I found it helpful to bring cards to write to him.  Even though he was little, he loved getting them in the mail.  I also got fruit snacks for him from the cafeteria to bring him every time I ran home to visit (when someone would sit with Madi for me) or when he came to visit me (when it was not RSV season, that is).  It sounds silly, but it was our thing, and it really meant a lot to him!  I think it really helped me too.  (** Just a little update... Conner is now 7 and STILL appreciates those fruit snacks and asks about them any time I am coming home from the hospital.  It's now our little tradition :)).  I also wrote David little cards and notes.  It helped keep us all connected and close.  We did not have a video chat set up, or I would have done that too.  It would have been really helpful.  We also were not able to have David and Conner stay at the Ronald McDonald, because David had to work (our moms helped watch him during the day), but that is also a great option for having the rest of your family close for visits and the such.  The Ronald McDonald house is awesome!!  They have kitchens and playgrounds, vending machines and toys, computers and activities, and a lot more.  Another great thing was letting some of our friends bring Conner and David dinners while I was gone.  They loved the company and yummy meals, and it helped take a lot of stress off of David.  Some of our friends even helped him clean the house during Madi's biggest stay, and it meant so much to all of us!

15- Don't forget a nice pair of slippers.  Hospital floors are very yucky, so you probably shouldn't (though I did) go around bare foot, so it's nice to have a pair of slippers to slip on and off.

16- Get out sometimes.  Take your child for walks.  Take them to the hospital playground or playroom if they have one.  Have someone sit with your child while you go shower, run home, spend time with your husband or other kids, or do whatever you need to do to stay happy and sane. 

17- Don't forget gum!  Sometimes things get crazy and you realize it's been a while since your last tooth brushing.  It's a fast way to freshen up until you have time to take care of yourself.  It really sucks when you can't figure out where that smell is coming from, and you realize it's you.  Yup, been there.  Deodorant and gum were my best friends some days!

18- It is ok to question why.  Do it politely, but do not be afraid.  I would have had a c-section, instead of the birth I wanted, had I not asked why I had to have that c-section.  I am so glad I asked why!


Well, that's all I can think of for now!  I hope this helps someone out there!


Here are some more tips to share from fellow bloggers:

http://mindfulmeerkats.blogspot.com/2012/03/10-tips-for-inpatient-stays.html

http://mindfulmeerkats.blogspot.com/2012/03/ten-tips-for-hospital-visits.html

Saturday, November 6, 2010

A great FREE online book about spina bifida

Someone posted a link on the yahoo group I'm on and I wanted to share :)





There is a free printable version and activities too.  Enjoy!!!

Thursday, November 4, 2010

Other Blogs I Love :)

I thought I'd share some other blogs I follow about children that have spina bifida and their famlies.  If you have a blog for yourself or someone you love that has spina bifida, please feel free to leave a link in the comments below.  I know for me, reading blogs that other parents maintain really helps me feel connected and more secure in everything we do with Madi.  It is such an amazing blessing to see all of these children thriving and loving their life!