Hope 4 Delaney

Hope 4 Delaney

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Playing catch up

Posted by hope4delaney on February 26, 2009 at 4:49 PM

Well, here i am. Finally getting five minutes to write about the last few months with bean.  The winter has not been kind to us.  The christmas holiday came and went without any big illnesses. Delaney loved everything about the holiday. The lights, the wrapping paper and all of the new things to play with. Even her big sister's things!! We experienced the first of many crying bouts when Delaney was wrestling a doll out of her big sister's hands. Both were crying. We, were laughing.

Outloud..... 

 

Delaney is now mobile! She crawls everywhere and has even been bold enough to take up to 8 steps by herself!!!! She'll stand up unassisted and take steps towards whatever it is that she wants at the moment. At only 9 months, Bernie and I have our hands full with this little girl.  She is very determined and focuses on things very well. It is amazing how she has picked up on things so quickly. We figure that is just a sample of the life this one is going to live. She says DA-DA and MA-MA and knows who is who when she is saying it.   Two teeth on the bottom make experimenting with big girl food a litle easier for Bean. She is starting to get used to the texture of different foods. At first, she would spit out anything that wasnt smooth like her baby food, no matter what it was! Now she enjoys nutrigrain bars and pancakes (extra butter too . . . lucky duck) peaches, graham crackers, mac n cheese, spaghetti and meatballs and so on. Pretty much anything we eat, besides the common things babies cant eat before one year of age, Laney eats too. With CF, she is allowed the high fat and sodium in her diet because of her need to gain weight and take in added salt.  Some snacks dont require enzymes, but if she eats a heavier snack, we'll have to give her an enzyme or two.  

 

The last month has brought some sickness to our little bean.  She had at least 4 weeks of augmentin due to respiratory infections.  With the sickness, chest Pt and breathing treatments increase up to 4x's a day. On top of all the other meds Laney get, it makes for a very busy day. Its time consuming and worrisome, but we do it anyway. Its what we have to do to enjoy our little bean for as long as we possibly can.  With the passing of this last week in February, Delaney had yet again become sick.  Riley had been sick with croup and was out of school for a week.  Disinfecting the house and all toys werent enough this time around. Our little bean now has RSV. The virus is dangerous for any baby, let alone one with CF.  We are back on anti-viral medication (cefzil) along with 4x daily treatments.

 

Needless to say, managing the medications and daily treatments has left little time for Bernie and I to do things around the house or for ourselves.  We're managing though. One day at a time.  So as it stands now, we see the doctor tomorrow. We are hoping that Laney's lungs are clear and the RSV has not progressed into a bacterial infection. That would mean a hospital stay for treatments. if the doctor says we are on our way to recovery, we'll look forward to our Disney trip as scheduled. Keeping our fingers crossed for a Magical time in Disney.

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