Fun day!

Today we went down the street to Generations church. They were having an open house, at their brand new location. We have been wanting to start church there but haven't due to Emma's surgery and recovery. But today we braved it and went to the party, and tomorrow we plan on going to church there. They are really nice. I took pics above there and at home. Emma is wearing her new dress I got her at the thrift store, she is only able to wear dresses, and she just doesn't have many! This one comes down half way between her knee and ankle but it looks longer in some of the other pics.

They had a moon bounce and a big slide. Derek and Ella loved that. Emma liked the music. Ella won a door prize, a fairly good size die cast "slug bug" car. Its red and she loves it. When they called her name on the microphone Derek went and helped her get it. It was so cute, he was not jealous one bit, he just wanted to make sure his sister got up there for her prize.

We are tired now, long morning getting ready and a hot day. Its almost OU football game time. GO OU! Emma will be watching, right in front of the tv cheering for her team today.

Home and doing pretty well

Emma is doing pretty good since getting home on Thur night. She has had some pain but all and all it hasn't been too bad. They sent her home on a pain killer (Loratab) and something for spasms (Valium). Her casts only come up to the tops of her legs, not the whole waist like they first planned. That is because they did not mess with her hamstrings, just her hips. She looks great. My first reaction in recovery was to cry over how tall she looks! She is just beautiful. The casts will be on for 6 weeks. Daddy had to go buy her some dresses since shorts or pants won't go over her casts. Dresses are a new thing for her since with her old froggy hips she was unable to wear them, but we have together legs now! Posted above are some before and after shots of her legs, plus a cute one of me and Emma.

I will try to keep everyone updated, we have just been busy and there really hasn't been a lot to update. Keep Emma in your prayers and thank you for doing so up until this point.

Quick Update on Emma

Update from Lori at around 11:00 CDT (fourty minutes ago or so)

Surgery is over for Emma and all went well. Around noon they should be done casting her (Purple cast!!) and then Lori/Darren and Donna/Brian can see her. It took about 3 1/2 hours to do the surgery part and well take about an hour to finish up the casting. They didn't lengthen or trim her handsprings because they didn't feel that would be beneficial for her.

Will update later after I have more info. Thank you to everyone praying for my beautiful niece Emma!

Emma's Aunt Lisa (Mimi)

Big day

Emma's surgery is set to start in a few hours. We leave here at 5am (about an hour away) to get to the hospital by 6am. Surgery should start around 7:15. It will take several hours but they say the stay should be just over night, maybe 2 nights at most if all goes well.

They will be clipping/lengthing her hamstrings, not sure which yet but they will figure it out once they are in there. Also be fixing the muscles that make her legs go OUT like they do, and clipping a "capsule" at the joint that will help her have more movement.

Everyone please pray all goes well and thank of Emma today, updates will follow I promise.

Dr visit, surgery is in a few days!!

Well Emma saw her lung doctor today and he gave us his okay for her surgery on her hips next week. He said its probably min. risk for her to be put under since she has pretty good lungs. Her breathing is more of a brain thing and since she will be vented for surgery all should be ok.

Donna and Brian leave to head this way tomorrow! I can't believe that on Friday the day after tomorrow I will be hugging my best friend again and seeing her with my little Emma. I am so excited.

We got supplies delievered today and things are almost ready for us to do the surgery and come home all prepared. Having that cast is going to be a big shock to us all and we will have to get used to it. But we will manage.

Good news is her doctor said she is doing so good she won't have to come back for 6 months!

Some exciting news...

Found out the other day that we are getting company for Emma's surgery. My friend Donna (Mommy to angel Daniel aka Homer, Emma's little boyfriend who passed away in April) and her husband Brian are driving all the way from MI to be with us for the surgery! I am so excited. They are leaving MI on the 14th so they can get here in time to play with Emma and love on her before her surgery. They plan on leaving to go home about the 23rd.

I am so excited for them to get to meet Emma for the very first time. I can't wait to see her getting kisses from Donna, who we have nicknamed Momma2, because we teased her that "Mother in Law" was a name for those no one liked, so she is Momma2. Emma and Daniel never met but had a very strong bond, and they brought Donna and Brian into our lives and for that I am truly thankful. They are family to us and always will be.

Emma had an appointment on Monday with her stomach doctor, who upsized her mickey button (feeding tube) because it was leaking just a touch. No big deal, take the old one out and put in a bigger size, it took all of 2 mins if that. They did it with Emma in her wheelchair and just leaned her back a bit so she didn't leak anything out on her stomach when they did the change. Emma didn't quite know what to make of doing a wheelie in her wheelchair!

All is going smoothly and just as planned for surgery on the 19th. Our next hurdle is her pulmo appointment (lung doctor) on the 13th. He has to clear her for surgery, I see no problem in that.

Thanks everyone for checking out our blog from time to time. I plan on updating often during the surgery time and if I don't I will get my sister Lisa to, so everyone knows how things are going.

Emma's big scare

wanted to blog last night but just didn't have the energy to do it. Wanted to fill everyone in on a big scare Emma gave us.

Yesterday afternoon her pulse ox machine went off, that is the machine that measures her oxygen saturation. It was only at 90 which isn't that low but I thought, ok well suction her trach. Which I did and she dropped into the 80's after I was done, so I did the next thing I was suppoosed to do and that is to change her trach out and put a clean one in. We were having to bag her by hand because her vent was pretty much useless at that point, I had Derek bag her while I got the new trach ready and she dropped into the 60's. Changed trach out, bagged her and she dropped into the 40's. Now mind you all the time she was a very ugly shade of bright purple and had her mouth gapping open and trying to catch her breath, it was so sad. I called 911. I bagged her pretty fast and got her in the upper 60s very low 70's while waiting on 911 They came and got her more stable and took her to the hospital by ambulance while I had to wait at home for Dad to get here and a ride to the hospital. It was maybe 30 mins but it was the longest 30 mins ever!

They gave her breathing treatments and watched her. Suctioned her more there and got a bit of a "plug" (hard mucus) so they said that is what had caused her to do what she did. She left the hospital after a few hours, on no oxygen and doing perfectly. She slept pretty much through the whole thing and woke up about 10 last night after being home for about an hour. She is resting now and I expect she will most of the day.

It was scary, the first real scare she has had since being on her vent. Before when she would have issues I always thought "Its ok when 911 gets her to the hospital they will just put her on a vent and it will help her" but now when something goes wrong its like a vent is no help.



So everyone please keep her in your prayers that she doesn't give us anymore scares like that. We have turned her vent heater way up to help give her more moisture and then are just watching her very carefully. Things should be just fine, but I think I will be very on edge for a while.

Just some pics

Not much to say, life is going good. Emma is doing well. Thought I would post some pictures, some are from the fourth of July the others are just snapshots I took this last week.

Quick update

Hello everyone sorry I haven't updated since Emma has been sick but summer time has been keeping us busy.

Emma's infection is all gone. Thankfully! I really wish we could keep her from geting these dumb old things but apparently people who don't move around a lot and have poor circulation can just get it from time to time.

All is well, not much to talk about. Just counting down the days until we get our hips fixed! Dreading the cast Emma will be in. Things as simple as a diaper change will become a chore. We are trying to plan out things as early as possible, and get things prepared. School starts the day after her surgery so getting Derek off to first grade might be rough for the first few days but we will manage.

I have appointments set up in early Aug. so Emma can visit all her doctors and be in tip top shape for her surgery. We are seeing the tummy doctor, the lung doctor and hopefully her normal doctor too. That way we run into no surprises.

Tonight Daddy is going to be home from dinner, his normal shift is 1pm to 10pm so he misses dinner but Sat is a day shift for him. We are making bison burgers and reg. hamburgers. Not sure the kids will like bison. Not much else planned just hopefully a quite evening at home.

Thanks be to God Emma is getting better!

Well all the prayer are working, Emma's infection is getting better. I was touch and go in my mind of a while, I guess I just don't have the patients to wait for my little girl to get better. But the last two days it looks much better and no more fever.

Daddy works tomorrow on Father's day but is off on Monday and Tuesday. Monday is boy's day. Daddy and Derek and a friend are going to the movies and then on Tue the whole clan is going to the Sam Noble Musuem to see dinosaur bones. Emma has never been, I hope she stays awake for it. Never fails something good is going on and she thinks its nap time. I will take lots of pictures.

Prayers go out to someone online we had been praying for her name is Marissa, she went to be with Jesus last night. She was almost 3 years old an had stage 4 high risk neuroblastoma. We have never spoken to her family but have really prayed hard for her, we ask that everyone please remember her family in your prayers.

HAPPY FATHER'S DAY to all the dad's reading. Hope you have a great day tomorrow.

Emma sick again

We took Emma to the doctor on Monday. She has cellulitis in her leg again. This time its in the upper portion of her leg instead of the lower part. I was going to take some pictures but it goes a little bit on her little bottom and I figured that was kind of private to post on the internet! :-)

Her doctor wanted her admitted to Children's hospital for tests and drugs so he sent us over to Norman's ER first so we could get tests started and transportation to the city. Well we got to Norman and they didn't feel she needed to go to Children's to be admitted. They sent us home with two antibiotics.

So far there is only slight improvement but the good news its its not worse. They told me it could be 3 or so days before we noticed much change. You just have to give the drugs time to work. I have very little patience for that. She isn't in any pain but she does get a fever and sleep a lot and I hate seeing her that way. I just want my big girl to feel better.

So prayers for Emma, if you please. We appreciate all the prayers we can get. We really want this infection to clear up soon so we can enjoy the summer before her hip surgery on Aug 19.

Fun in the Sun

Emma had all kinds of fun yesterday when we cooked out for Memorial day. We had hamburgers and the kids squirted each other with water guns, and did side walk chalk drawings. All was good until Dad was chasing them with water guns, turned around and Ella was right behind him and he fell over her, trying not to knock her down, he really hurt himself. He has a good gash on his knee. He pulled a hunk of concrete out of it (I told them no running on the sidewalk!) Its pretty sore but I think he will be ok. Anyway above are pictures of Emma, I took the chair straps off of her chest so you could see her shirt, she was still buckled in at the waist and her lateral (black things on either side of her) held her in just fine. Not a safe way to travel far, but fine for pictures.

The Toothfairy is coming!/EDIT

Recently we noticed that Emma's teeth were loose, I usually use a toothbrush when doing her teeth and hadn't noticed,(bad Mommy) but was using gauze and it was like they were half way out they were so loose. Well today I was gauzing them and out popped one . I figured the others had to come out and would in the next few days so I went ahead and wiggled them out too. They were all so loose it took less than 1 min total and maybe 2 or 3 slight wiggles each and they fell out. All 5 of her baby teeth she had are gone.

Now I shouldnt be proud her teeth were knocked out due to her toungue pushing them (she doesnt shut her mouth good, tounge protruds) but i am proud, she didn't flench once, I thought if she did or cried or her pulse ox went up even 2 points on her heart rate I would stop. Nope. She did good and my big girl gets to get lots and lots of money from the tooth fairy.

She will go to the dentist hopefully this week, they were trying to get her in anyway, finding someone who took medicad and could see her some time other than 4 months from now! Now we have en excuse to get in sooner. I knew I had to get those enamel knocked ones out since it is memorial day tomorrow no way would we get to be seen.

Here is a pic of her teeth. Keep in mind at 3 you should still have teeth and the roots don't shorten like they do say in a 6 year old who's teeth are naturally loose that way, hers are baby baby teeth and would not have been ready to come out if it weren't for that pesky toungue. I can't believe she was in no pain, I am wondering if perhaps the nerves/roots died a long time ago or something? Her gums are swollen from her phenobarbital too so maybe that is part of it?



Update--Emma got 5 golden dollars and a beautiful note from the tooth fairy. She isn't sure what she will do with her money, maybe save it.

May 25, 2008

Emma is doing wonderfully. She is taking a nap so she will be ready to watch some Nascar with me later. :-) Tomorrow we are having a cook out for Memorial day and playing all kinds of fun stuff outside for the kids. We bought a horse shoe set, some sidewalk chalk, and water guns. I will have to help Emma with her horseshoes but I bet we can toss them together.

Last week Emma did something she has never done before. She went to walmart! Yep 3.5 years I managed to keep her out of walmart and finally broke down and took her. We used to keep her from big crowds due to fear of her getting sick but I am since made the choice to get her out some, and let her live life. What kind of life would she have if I kept her locked away for ever? Not that we were litearlly not taking her out at all, but we were probably more cautious then need be. That said, come flu and cold season she is NOT going out, I am willing to be that risky. She slept through most of walmart. Not very impressive for her. Since her Daddy works there now we got to show her and brother and sister off. Then we went to eat at Long John Silvers. Above are some pics from the day. The last one is her in bed, after I tucked her in. I gave her bozo hair. She didn't much care for that and yelled at me. Cute picture though.

Happy Memorial day everyone. Don't forget to remember those who lost their lives fighting for our freedom, and pray for those who are still fighting for us today.

Eye appointment went A-OK

Emma went to the eye dr on Thursday. No big news to share. We went to find out what we could do about Emma's crusty, icky , gunky eyes. She does blink, but not as good as she should. Well, the eye ointment we have to use to keep her eyes from drying (any eye ointment for that matter) holds bacteria close to her eyes so she tends to get eye infections easily. He gave us a prescription for some eye antibiotics to use as I see fit when her eys flare up. Told me to wash her eyes with baby shampoo, which I kind of already knew to do. He was see us in 3 months to see if anything changes with the new cleaning/ointment routine. He did say her optic nerve and pupils look great, so she is seeing , which we already knew but its nice to have confirmation of that.



We finished early so while waiting on our ride we went to the farm supply store and shopped. We saw baby chicks and ducks, and shopped for boots but didnt find any we liked that well. I am not even sure I could get Emma's fat little flintstone feet in boots, but did find some for our brother though, will have to have him try them on first. Above are some pictures I took while out. The lollipop came from the doctors, then we saw some John Deere stuff, a saddle Emma likes for her imaginary horse, and some cowgirl boots, and don't forget we had to carry our Homer Simpson doll with us in honor of Emma's boyfriend Daniel who is her angel now.

PT and grocery shopping

Emma went to PT today, after really long break of not going thanks to waiting on insurance approval to go back this year. She did ok, we spent most of the day trying to figure out what to do with her hips. They are terrible. I can barely get her in a bathtub anymore and you have to turn sideways to go through a door. Her therapist Amy said she was pretty sure they are sliding in and out of the socket when we move them. It doesn't seem to hurt Emma, she yelled a little bit but I was shocked not to get the response I thought I would out her over something like that.

So braces for her hips and possibly surgery are in store. We have to see a dr then another one most likely first. I am ok with the surgery idea, I hate to see her go through that and then be casted but I really want to get her legs fixed. I would hate to do 6 months of braces, with no results and then end up doing sugery anyway. I know that lots of kids hate their braces, I know that her boyfriend Homer hated his.

If surgery is an option I might just push for it soon. It would be nice to get it done in the summer so Derek and Ella could stay at family's house and I could spend all the time with Emma while in the hospital, and Darren wouldn't miss work. We are wanting to get Emma in school in the fall too so I want to get it over with and let her start school. But we do have to wait to get into the drs and those of you who go to alot of drs know that might take a while. We will see. Nothing is 100% for sure about surgery, we just threw that idea around. We won't know anything until we see the dr. All the thearpists are at a loss on what to do with her hips, Poor Amy has tried everything she can think of at this point.

Emma had fun grocery shopping with us yesterday. She has been shopping with us before of course, but this time I took pics because it made MY shopping trip more fun. I hate shopping. Emma did not like the meat section, it was too cold. She liked the candy aisle and the soda aisle. Hmm wonder if I could get M and M's down her mickey button? I know I could get the soda down. LOL

Missing Daniel

Daniel 6:21
Daniel answered, "O king, live forever! My God sent his angel, and he shut the mouths of the lions. They have not hurt me, because I was found innocent in his sight. Nor have I ever done any wrong before you, O king."

My little friend Daniel is in heaven now, and I keep thinking of that lion's den. Life kind of threw little Daniel in a "lions den" of sorts, a world where he would endure pain and sickness among the happiness in his life. But he never wronged the Lord, he and his family had faith that remained strong and God sent his angels to shut the mouths of the lions and keep him safe. He took him to Heaven so he would not endure hardships like that any more. He is safe, happy, healthy and running up in heaven.

I will forever miss that boy. He was a blessing in my life. He will be with me always.

His parents are hanging in there. They are so much stronger than I could ever be. Pray they continue to draw strength from their faith in the lonely days ahead.

Park trip

Emma went shopping at cvs today and also to the park. Derek went along with her, and Mommy. I put her in the baby swing which was easy, I still had to really support her back so she didnt swing good but it made great pics. Enjoy the pics, they will be the last swing ones. It took me 10 mins to get her OUT of the swing. I was starting to get worried. Thankfully her Bubba helped us out. She had lots of fun and got some new glasses today. Her old sunglasses were getting too small and not very comfy so I got her tinted swimming goggles. They have a strap, and soft squishy rubber around the eyes for comfort. They aren't that dark but I like that, her old ones were so dark we could not tell if she was awake or asleep. The main thing is they will keep wind and dirt of her eyes and provide some UV protection. Emma made sure to take her Homer doll to the park, so she could show everyone how even though her boyfriend "Homer" Daniel is an angel now his life still goes in her heart.

For Daniel...

PIC OF EMMA'S LOCK OF HAIR AND SMALL RED HEART, IN HOMER'S HAND FOR THE FUNERAL, HER PICTURE WAS ALSO IN HIS CASKET.


I wrote this on the plane coming home last night from Emma's boyfriends funeral. I really wanted to share it with everyone, since when they asked at his funeral for people to say a few words, I was upset and not prepared and I don't feel like what I said there was enough for him. So I wrote him a letter.... (BTW Sorry its long and probably full of typos, I am tired)

My dearest Homer,

When I found out you were gone all I could think of was your poor Mommy and Daddy and how terrible they must be feeling. I had a strong urge to get by your Mommy's side as quickly as I could and be there for her and your Daddy.

Things worked out and I got on a plane. All the way to Michigan I didn't know if I should be sad about you, or excited because I was finally going to get to see your handsome face. I knew your spirit was gone, but for some reason I had the overwhelming need to see the perfect body that held you for six and half years. Perfect is what you were, despite your limitations. Perfect on the inside and the outside.

I got the the funeral home and peaked through the crowd and saw you laying in your casket. I started crying very hard. I was rushed with emotions, but mainly guilt. Guilt that the first time I was seeing you was in your casket and not at home watching simpsons or listening to your music. For that I will forever be sorry.

Just then I saw your Mommy. The amazing woman who brought you into this world and loved you so deeply. We hugged and cried and laughed. She said "You are so beautiful" to me but I thought she was crazy. She is the beautiful one not me.

I walked over to get a closer look at the boy who has held Emma's heart and mine for so long. At first I smiled, your Mommy is right you do look a lot like Emma and that warmed my heart. Then I cried, because you were, just like in your pictures, the most handsome boy I have ever seen. Your trach was still in, even if you don't need it where you are now. Your hair was spiked up front, just like your Daddy likes. I remember whispering I love you and I kissed you right between the eyebrows. That was the first spot I kissed all my kids, and you my dear son in law are no exception. I sang you are my sunshine softly into your little ear, kissed your head, heart, hands and eyes. The eyes I heard stories about you "talking" with. The eyes I never got to look into in person and see your soul. But I have felt you, and seen those eyes in pictures so much that I felt as if you spoke to me all along. I kept my promise and pinched those fat cheeks just like I said I would when I first met you, I just wish you had been here to smile inside when I did it.

Your funeral was perfect just like you. Your buddy Jay had us all smiling with his heartfelt speech. Your mommy and daddy spoke and touched all of us. Daddy wrote a beautiful song for you. and Great Aunt Katy and Uncle Ron sang as beautiful as the angels. Ucnle David said a poem, and we knew he loved you so much. Uncle Billy had a letter that was read, I never knew you changed hs life the way you did. said I a little something nothing planned but from my heart. It didn't begin to cover how I feel about you. So here I am on a plane looking out the window and seeing heavens clouds hoping I might get a short glimpse of of you flying by, running and playing in Heaven.

To meet your family was a blessing. To watch the love your Mommy and Daddy have for you, warmed my heart. Your daddy showed me all your tickle spots and kissy spots. Every time he kissed your little body I couldn't help but smile and cry all at the same time. He so loved his boy and always will. I saw what an amazing Mommy you have, when she brought me over and introduced you to me, and fixed your hair and straightened your clothes. You brought me them to my life Homer, and for that I will be forever grateful.

All the service was very nice, yet in the back of my mind, way back there I kept thinking I wish people would hurry up so I could go back up there and kiss you. Then when it was over, I suddenly wished someone else would get up and talk or one more song would play so I didn't have to say goodbye.

My legs could barely carry me as I walked to pay my respects. I know I will see you in Heaven again some day so I didn't say goodbye. I said what any cool 6 and a half year old would say. I said "Later Gator" and imagined you smiling down on me and saying "After while crocodile"

So later, gator save a dance for me in Heaven but make sure to save one for Miss Emma too. She will forever love you, just as we all will. I will miss you every day until then, and keep your pics close to Emma so she won't cry. I will always love you, my dearest son in law.

Love,

Momma2