complete meltdown. .....

I'm doing this from my phone. ..so pardon any errors. ..lol. Ok ..The long awaited update from our last plane trip to St . Louis over thanksgiving.  Do you ever see those people with a fussy child throwing a temper tantrum?  Yep ....that was us......my kids pick the worst time to have them. Going there he was an angel. ...and everyone talked to him and complemented him. Coming back .....different child. He is 4 ....and we have had to walk a fine line due to his heart and his throwing up issue over the years. We did notice he was very tired that morning and may not have had enough sleep. He was playing on the iPad before boarding. ..I went across the gate to buy him m&ms ...He asked me if I bought them ..yes ...called for boarding. ...He pushes his umbrella stroller. ..to gate ...then he stops ......I had a sinking feeling. .....He says ....I wanted to go with you to buy the m&ms. ....?? .. still didn't know he was about to explode. ...still walking to the gate ...I wave the bag of candy and walk backwards. ..lol. At this point. ..my child has been replaced with a demon child ...He says ...I dont want those nasty m&ms. ..I want to go buy some with you ..... ??? He then says ...screaming. ...I'm not getting on the plane !!! ..... I'm thinking. ..yes we are !!! I've got football game I have tickets for ..High school play off game at cowboy stadium. ..hello!!! We proceed with this screaming child to gate ..we fight over the stroller. ...He calls the gate agents ..stupid idiots. ..I apologize. ...Keith says ..it's ok ..He could have said a lot worse .. lol....doesn't make it better dear. Screaming all the way down the jet bridge. ...grabs onto the door opening as I carry him on plane. Screams all the way to seat. ....flight attendant. ...greeting us ...did not take enough caution to stay out of striking range ....stop he leans over to us to speak to us and Keifer pops her on her shoulder. ...I apologize again. ....sigh. Get to our row....He won't sit ..I have heavy purse and laptop on my shoulder. ...yell to Keith. ...get this stuff off please! !! He helps. ....now ladies. ..here is where men don't pay attention to details. ...I NEVER put my purse in overhead. ....NEVER ... always keep it and any bag I have under seat in front of me.  He rolls my stuff up and puts in overhead. Now this is my fault. ...I remember. ....my half drunk Starbucks is in my purse !!!! Keifer is still screaming ..now I'm screaming. .oh no!! My drink is in my purse! !!! Dirty look from Keith. ..lol...retrieves my purse ..I save my phone and iPad. ...sit down. ...now I have to get this screaming child to stop and sit in his seat and seat belt on. HA! I kept thinking they were going to escort us off!! Finally I patted his back and he finally shut up and yawned.  I got him in his seat and belt on. We get in the air and he looks at me and says ...I feel much better now.  Oh really! !! That's great. ..now we are going to have a talk !!!! We discussed what happened and he said he was sorry.  Then for the last hour of the flight he proceeds to recite Thomas the train stories in a loud voice. ..gives me a train to play and tells me what to say ..sound effects ..everything. ..replays the same scene over and over. . About trains crashing! !! Can you please not use the word crash! !!! Flight attendant. ..yes same one. .comes by...oh I see he is feeling better now and entertaining the whole plane with his Thomas stories. ...lol..  so next time if you see someone that has a child having a meltdown. ...just look the other way ..lol...and sympathize. ...trust me I wanted to spank him. ...but it would not have helped at that point. ...it could have also made him throw up and I definitely would have made it own you tube. Wish us luck today as we try again today !

One in a Dillon ..............

Okay I'm going deep on this one .....but some things happened recently that touched me. I meet and sometimes just learn of other families through a common link we share ... our kids ..... even more so .. our kids with medical conditions. Not just Keifer .... Breanna .... with her own medical condition and even Zack and Zoey with their ADHD .... I have met some wonderful people  ... found some great support. I have been lucky to meet a few in person ... others I just follow on Facebook ..... with all of our kids and where we live and my job I cant always make support group meetings and functions ... as a matter of fact I have only made one meeting ever for  the heart support group from Medical City. That group in particular though is a very close group ... I again wish I could join them but maybe one day ....they are all very kind and caring. One couple that is my age and with a son close to Keifers age .... has heart defect .. same hospital .. same surgeon ...friends on Facebook....... they came to see us in the hospital .. actually ran into them a few times .. July 4th , etc .... but as we were being discharged one time this summer ... this couple came to visit us and brought Keifer a gift and we talked for a little while ... they are just the sweetest couple ever. The father ...... passed away in his sleep  ..... at age of 39 .... on Keifers bday last month. I went to the funeral this past Monday ..........it was very emotional .... because .... lots of reasons ... but Im sitting there thinking about how  I came to be sitting there. I was there because we all have a common bond ... me and these other families ... our children ... with their heart defects..... and I watched the others around me and I knew so much about their kids and their journey. We are always so worried about our children not surviving with their hearts ...... but this time it wasnt a child. As Im sitting there then the preacher gets up and says someone is going to say some words  .... I was looking down ... I thought .. I dont know who he is.... but he started to speak and he was explaining who he was.... I knew him ... of him .. I never met them personally but I have followed their sons story for months .... their facebook page is Smiles for David .... he passed away this year .... and I remembered him .. and here was his father speaking at this fathers funeral. Wow ....and he did a great job .... he gave a very accurate honorable description of Dillon..... Im glad I went .... I was honored to have met Dillon and his wife Amy and their sweet boy Ethan. Amy wrote some very touching words to Dillon but what stuck with me was her statement ...... He was one in a Dillon ................

First .... Keifers New Room .......

There is not enough words to tell Special Spaces DFW how much of an impact they made to our lives... and to tell them thank you. They did way more than just makeover Keifers room ... it spread to other areas of our home and our front yard and the other kids and beyond .... way beyond. We appreciate everything they have done for us ......... funny though ... beyond the value of all the wonderful things they brought into our home and provided for us .....the best thing of it all was something very simple ....... sleep .... yes sleep  ... for those that know us .. Keifer has slept with us for the past 3 years ..... he is a night owl and he had a very bad throwing up problem that is undiagnosed and he has thrown up in his sleep before.... I havent slept well for years .. always listening for him or being woken up by him because he stayed up till 2, 3 , 4 am.......... Keifer has now slept in his Thomas bed in his new Thomas room every night since Oct 26th.......... I dont know if anyone can fully understand what this means to my whole family. Its HUGE........ really.I added some pics below ... enjoy .... and if you get a chance ..... do something good for someone ... no matter how big or small .... a cup of coffee .....groceries ..... whatever .... you may never know how much of a difference it could make in their lives.........

Four years ago ........

Wow .. this is a hard month for us.. for me ... Brandon my oldest son was born on October 4th .. almost 3 weeks early !! My water broke at work !! My always funny, sarcastic and sweet father in law passed on Oct 10 th ....  which his death lead to a series of events including discovering Keifers heart defect ..... I was given one week to prepare and be induced ... I chose my mother in laws bday Oct 29th.. she had just lost her husband so why not give her the best bday present that I could .... a grandbaby ! Here we are now ... 3 open heart surgeries later ..... and a lot of bumps along the way............ We also found out yesterday that our beloved dog Kola ...... has stage 4 kidney failure...... I dont even know how to tell the kids..... Ive been sad for 2 days now. This dog has brought so much into our lives and has loved us unconditionally. We are going to try some medicine and IV treatment but even it is beyond our budget.... after this if he doesnt respond or takes a turn for the worse we will have to put him to sleep. I am dreading this immensely. On a brighter note.... Keifer is getting a room makeover from a fabulous organization called Special Spaces ... they are coming to makeover his room and they are sending all of us to the FT.Worth Zoo for the day !! When they are done we will come back to the house for the unveiling of his new room ! They also are going to have a special bday surpirse for him and a cake !! Keith's family is flying in and everyone is coming to our house Saturday to help us celebrate and see his new room ! We miss our family very much and are very excited to share this very special weekend with everyone. Besides being a very memorable month it is also a very busy month.... school is in full swing and football season for Brandon.... Halloween is around the corner as well. And we have Breanna with her medical condition .... she is having some issues and has had bloodwork run 4 times and now will be scoped in less than two weeks. Please keep her and Keifer and Kola in your prayers........ More updates over the weekend and pics !

Percy for Halloween

Letters for his room.

Special Spaces working on his room!!

Keifer and Crew Update !!!!!!!!!

It's been a while right ?  I know .. I know .. we got super busy ever since we got home from the hospital. I had two days off then back to work.... and the two days I was off was spent taking Bre to Dr. appt and IV infusion at hospital. Keifer has been doing well .. he is still on 4 meds a day and low fat diet ... um .. except those M&M's he has sometimes.... went to cardio Dr a few times and now she doesnt have to see him for 4 months !!!!! Great !!! It is back to school time ...... even more things to do ... like I needed more ?!?  Football games , school events , football games , work , football games , Dr. appts ,,, etc ... etc .....  I did get in touch again with Special Spaces and they came to our house to meet Keifer and check out his room. They are planning on doing his room makeover on Oct  26 ! Just in time for his bday .... they send us on an outing for the day so they can make his room over and when we come back to see it complete they are going to have a special bday surprise for him !!!!! We are very grateful and are looking forward to it. Meanwhile I still need to get a hold of make a wish and get the ball rolling on that and my work who sponsors families every year wants me to try to coordinate with them and they will see about doing some wish enhancements for Keifer ...... that would be very special. Also when I went back to work .. my very kind and thoughtful coworkers gave me a card filled with money over $200 and was very much needed and appreciated. My sister and mom continue to help us as well and we thank them greatly...... new pics below... enjoy.

First Day of School

Rare moment of sleep.

Me giving back .. blood.

Cardio visit

Today we saw Dr.Kao at Medical City for follow up. Keifer screamed bloody murder every time someone came near him.... he would not cooperate for the oxygen sats or blood pressure or EKG. Dr. Kao did listen to him and said she didnt hear a lot of fluid and lowered his dosage of meds per day. We go back again in two weeks. I have returned to work and we are right back to our crazy chaotic schedule we had before. We got some very lovely handmade cards and gifts in the mail from Brett and Mindy West's children ... thank you !!! The did a beautiful job on their cards to Keifer and included some of their toys to him. New pic below.....

First day home .... next round of Dr. and hospital visits for Keifer's sister

Now It's Bre's turn ..... luckily not any overnight stays ... but for those who dont know ... my oldest Breanna has inflammatory bowel disease .. its an auto immune disorder .... she has to take IV infused Remicade every 7 weeks to the tune of $27,000 a dose .. yes we have insurance .... but I still have to pay $1750 per person max deductible every year. This time its at Cooks Childrens Hospital ... We saw the GI Dr. today .. Keifer went with us ... Dr.Keng has been both of their doctor. Tomorrow is her infusion all day .... I cant be there with her as I normally do  ..... I have Keifer ... just so happens .. Bre has a new boyfriend and he and I had a conversation this week on Facebook while I was still in hospital and I discovered that he has an auto immune disease too .. he is currently in remission and he at one time was on Remicade also .... he wants to go with her .... she wants him too also .... we have been told before she can have a friend come ... so ...   I am allowing it.... it helps me out. Due to financial reasons .. I am returning to work 2 weeks early .... I was sick to my stomach over this decision..... I am devastated I wont have any down time between leaving hospital and returning to work full time... but I will do what I have to do for my family. This whole ordeal has taken more from me than I can put into words. I will return to work this Saturday. Keith will be home on weekends to be with Keifer and Mon and Tue Bre will be with Keifer. By next week he can return to daycare. He is cleared to return 4-6 weeks after surgery.Keifer follow up with cardio is on Wed.