update and rant all in one...

[evilstepmother]

Wow! It has been forever since I was last on here... I think the last time I sat down and typed in here. Eathen was in a full body cast after having his hip reconstructed. Tons has happened in the past year, Zac just informed me we are coming up on the one year anniversary of the hip surgery. Eathen, made it a full year with out any hospital sick stays- all visits were planned and successful surgeries. He started school (PPCD- like pre- pre-k) in January of this year, where he hit his one year anniversary of the no sick hospital stays. February he got bored at school and played with his PD cath which took him to the hospital for E. coli, where he lost over 14 of his precious, worked so hard to gain pounds, that we were so close to getting on the list. They got him in remission and it came back the following month with a vengeance. He ended up with a 52 day hospital stay where the E. coli morphed itself three different times- and they finally took out his pd cath and put him on hemo. He did however leave the hospital for the first time in his 4 years of life- hungry and eating food- his main dish/ favorite is spaghetti. I think he could eat his own weight in it if we let him. He has now been a hemo patient for almost 7 months... after the hospital stay he continued back to school (PPCD has summer classes so the younger students don't fall further behind). He started this semester in PPCD. He should technically be in the Pre-k class for his age- but have decided that with his last hospital stay- he would be better off staying back. July first he decided that he would was able and wanted to walk on his own without the aid of a walker. He has been going ever since. Nurses and doctors keep telling us to just wait until he get the transplant he will have so much energy. We respond to the comment, that the thought of that is just a mean joke- we couldn't imagine him with anymore energy. This July he gave us a big scare when he started complaining of a headache (this is the first time he has ever complained about his head, ever). Zac took him into the ER and they did everything from scans to a spinal tap. They decided to keep him a few days for observation because his bp was high. After a few days, he lost his vision- then the doctors decided they needed to look further. His bp had gotten so high he brain started to swell and it was pushing an optic nerve causing the vision loss, his dx was PRES. They got his bp down with 3 medications and a 4th fast acting one for the break through times and sent him home, they told us that his only remaining kidney needed to be removed because it was causing the bp changes. August they removed his remaining kidney on a Friday, and Monday he decided that he was ready to go back to school (PPCD is 5 days a week for 3 hours- but he was already itching to get back to his friends).  He is at about 10 lbs shy of being on the list and with how that weight gain has been here recently- it seems like it will take forever!

[evilstepmother]

Sorry that was so long- like I said I think it has been about a year since I was last here and I was about to start ranting and realized, it made no sense to those who last read about Eathen, since he was in a full (stinky) body cast. Above I mentioned that Eathen left the hospital from his 52 day eating food. Thats right- he was EATING FOOD- real food, not just formula through his g-tube but spaghetti- applesauce- substance!!!!! Food that sticks to your insides, food that puts on weight and oh the happy days, when Zac heard, "I want more, please". Then it all stopped! One night he is eating us out of house and home, the next- back to the same old refusal to swallow food. I don't want to play the blame game but at this point I so frustrated I can't see straight. On labor day we had out respected parents over for dinner. Eathen hasn't taken to the red meats to quickly (too chewy) and it was a cookout type dinner so we had a brisket- he put a bite in his mouth and 25 minutes later it was still there. Zac asked him to swallow and he didn't, so Zac's mom, "Nonna" told Eathen to just spit out the food, he had gotten all of the nutrition out of it that he could, and held out a napkin for him to spit it out, and Eathen did... Ever since he hasn't swallowed a single thing without long bouts of frustration with all parties involved. We went out to dinner with Zac's parents last night, and they came up with excuse after excuse for him as to why he isn't swallowing food anymore. It came down to Zac's dad, "Poppy Boy" yelling at me in the middle of a restaurant, and lets face it, I'm hard headed- I yelled back. Apparently since I am not Eathen's real mom and I haven't been around the whole time, I know nothing about him!

My frustrations are out of control! We have been a family for over 19 months now and NO, I wasn't there at his birth. No, I haven't gone through being faced with signing a DNR on him or being told he won't make it to see another month, in my 19 months with him. But obviously that means that I know nothing! Nothing at all, in fact I know so little that he has the right to yell at me in the middle of a full restaurant, because I asked Eathen to swallow food? I feel like all of my worries- all of my love for this man and his child is for nothing, because I will never know enough about Eathen to rightfully take care of him or now anything about him... AAAAARRRRRRRGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHH

[looneytunes]

Hi Evilstepmother!  It sounds like your spouse needs to step up and take care of this.  Maybe a good old fashioned "strike" would help. 

Keep your chin up and bless you for caring enough to take on a special needs child!

[willowtreewren]

As far as Eathan is concerned YOU are his mother.

Don't let the in-laws convince you otherwise. It might help to have a talk with them (with hubby's support) when emotions are not running high.

Let them know that you ALL want what is best for Eathan. You ALL love him. And as with any child who has special needs, it is very important NOT to treat them too deferentially because that will affect their emotional development. Just keep saying that you ALL love him and want what is best for him.

 

Best wishes.

Aleta

[Jessmomto3]

That must be so frustrating! 

How wonderful that Eathan has you and his dad to take such good care of him!  How old is Eathan?  And what weight does he have to be before they will do his transplant.  Our little one just got a kidney at 18 months old and he had to be 10 kgs. 

[Rerun]

Is there a physical reason that Eathan isn't swallowing?  Other than his toxins are high and he just doesn't feel good?  Try something he likes other than Steak in a restaurant!  Granted our renal diet doesn't leave much "good" food to eat.  But, a bite of Mac and Cheese is better than nothing.  A couple of French fries as a reward for eating something else on his plate?

[pelagia]

I can't remember exactly how old Ethan is, but even kids that aren't special needs can be finicky about food when they are young.  I made a lot of meat loaf for my son.  I would whirl up veggies and mix them in before baking. It was so much easier than trying to get him to eat everything on the plate.  Seems at this point getting calories of any sort in is most important. 

Hope things calm down with the grandparents. 

[evilstepmother]

There is no physical reason for E to not eat.... pervious to the little comment that has put everything to a hault, he ate things- not so much meaty things (but honestly thats ok, since his protiens are normally high anyway) but loved spaghetti! And would have eatten it 4 times a day if we would offer it that often. he had a few other things that he liked, and everything at this point is a no go!

Actually, E's doctor told Zac yesterday at dialysis that once the surgeon signs the ok- they are starting the many visits to get the ok's to get on THE LIST.... we are excited and Zac is saying that he hopes to get E the list before new years.... HA!

[EEsDaddy]

One thing about my family is that they do not let people live down any mistake they have made in the past! There are several "skeleton's" in my closet and because of those there is "NO WAY" I can be a trustworthy parent that knows anything about Eathen. This is a big source of all the frustration coming from ESM and myself. They think just because we have to have a little help to pay 1 bill they have full reign to rule our lives. I do understand this is the only grandchild they have ever had that lives close so they want to spoil him, but at what risk. They do not seem to understand that Eathen being fluid overloaded can cause him to be in the hospital for weeks or even worse have another heart attack.

[looneytunes]

EE's Daddy and ESM....you are both special people for what you do.   You will find a way to let the grands know that you appreciate all they have done to help in the past but that you are doing all you can to ensure Eathan will have the best chance at his future.  ESM...being a stepmother to any child is hard.  I also had the primary caregiver role of a special needs child and it's even harder when you are not the biological mother.  But, your desire to be there for Eathan will overcome a lot of obstacles...so keep on going!