Posted By Posting
Sep 20, 2008
Some good... Some bad...
I am going to try and update quickly. I have read through and tried to respond but I have missed several days. I am not sure if it is the medicine or what but for the past 2 weeks I am up all night. I get tired about 7 am and will sleep until about 9 am. It is nice being able to clean and get it done while the kids are in bed but honestly I am exhausted. I can go to bed at normal time but I just lay there wide awake listening to the sound sleeper (BTW this thing really works with babies like it says. It cost 20. at BRU) and can not fall asleep. I am so sleepy now but I laid down only to lay there an hour and then I got back up. Hopefully this phase will pass.

The twins are still sick with the ear infections and colds. Braddy is a lot better. He is on the eating strike again. Every couple of weeks he does this it seems like. He seems to be refluxing more. The GI has started him on Carfate. He is thinking this may help with the strikes. Will keep you posted. At the pedi yesterday he was 18 lbs and 5 oz.

The babies had their 9 mo check up yesterday. Prestyn is 14 lbs. 4.5 oz, 26.75 in, 17.25 in head. Avary is 14 lbs 6 oz, 27.25 in, 17.75 in head. They are still both off of the charts. He said they would more than likely be over 2 before they catch up. Pres is being referred for a feeding eval for the gag ans sensory issues. Ave is already being treated. He said they can now have anything to eat except for the normal hazard foods for babies as long as they tolerate it. He said I could take them completely off of baby food if they tolerated table foods. They won't eat table foods b/c of the texture so I am keeping them on Baby foods right now. They did have their first bowl of ice cream tonight. They absolutely loved it although they gagged a lot.

Avary has several issues that I am so concerned about. 1.He sticks his tongue out constantly. It is different from the ordinary way. The pedi said it is due to the hypotonia. It should resolve as the muscle builds up. He stay pale and cold a lot. He done blood work and I won't know the results until net week. He is concerned about the way he crawls and drags his leg. Also the way he uses his left hand almost solely is alarming. He uses his right very very little. He is sending us for a PT and OT work up. I checked on programs here like some of you have mentioned but we have nothing like that. Each session will be 30. copay. It is well worth it if it helps him.

Now the bad news.......... I found out today at the ENT that I have lost 45% of my hearing. This is a total shock to me. I inherited it from my daddy. I have to have hearing aids but who has 2800. for them. I guess I will hear the same until Mom gets her wreck settlement and she is buying them. They are sending the check Mon but I am sure they will hold it since it a quite large amt. I will get them as soon as i can.

Michael has to has sx Tues. He is having a passage sx for the shortness of breathe. He is also taking out his tonsils and adnoids. We were told by the ENT the sx was from h***. It is major and he will be out of work 4 more weeks. I just want him better.Please pray for us Tues.

Haven't heard from the bank but i feel confident it will happen. I am thinking and praying for all the los who are sick and in trouble. Tomorrow will be a better day. Thinking and praying for you. Carla

Sep 20, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Is the sticking the tongue out considered tongue thrusting? Have u tried to look it up for yourself yet. My DD does this and it does seem worrisome. I know what u mean by not the norm.
I am sorry u r having such a hard time. Life seems to be throwing things at you from all angles. I hope that some of this can resolve sooner rather than later. I hope that you have a very good support system and some help with the lo's.
Sorry that Michael is still not well. U seem to have a lof of strength and I hope u know that. If there is anything I can do from afar or help with, let me know.
I hope that the bank will send the money sooner rather than later and that u can get the hearing aids u need. I am not sure what your insurance status is, or financial status, but there are people out there than can either donate the hearing aids to you, or provide for you some of the cost. It is financially based though and generally goes by the income level. It might be something for you to consider seeing all the other expenses u are currently dealing with. Also the same for prescription medications.
I have found that some will consider your independant needs regardless of your matching their qualificaitons or not.
Please do google your county, along with financial assistance if this applies to you or if you need it. There are dozens of resources out there to help.
At some point in time my husband and I needed help with even food. The help was provided. Later when we could afford it, we gave back more than we recieved. If he loses his job, we will need help again. But as always will return the help and then some when able.
Please let me know your county if you need help finding resources. My time is limited, but I will find what I can to help anyone willing to help themselves.
Sep 20, 2008
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Glad to hear Avery is on the right track to getting help! Your family has so much going on. no wonder you can't sleep. i go thru periods of time where I just lay awake too and after a few nights of it I resort to a half dose of OTC sleep meds. That way I can sleep but not totally out of it if E needs me!
Sep 20, 2008
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I'm having a hard time finding the "good part". Mercy!
Check with your
doctor first!