Andrews Updates

Milwaukee visits (update 02/08/2012)

Wednesday, 08 February 2012 19:50 | Written by Shayne |

Andrew had his back MRI this morning for follow-up on his syrinx (pocket of fluid) in his spine. Luckily the nurse got an IV line in the first try. Usually he is a really tough IV start. So we were thankful for that starting off the morning. Otherwise the MRI was uneventful with the sedation lasting all day, still tipsy at ~8pm.

We spoke with his neurosurgeon about the MRI, the syrinx is stable and has not increased in size. So we will get another MRI in 1 year to evaluate the brain and back. That is good news.

His Neurosurgeon does want him to see an Orthopedic doctor for his back/scoliosis and that should be in May.

Andrew also saw a rehab doctor. The plan will to get more botox injections in the left arm/hand. We can hopefully coordinate both appts in May.

So more appts on friday...... but good news so far.

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Andrew's Birthday (update 02/04/2012)

Saturday, 04 February 2012 20:00 | Written by Shayne |

Today we celebrated Andrew's 3rd Birthday. His true birthday is on Monday. Andrew will be seen in Milwaukee this week for his follow-up MRI, neurosurgery appt, EEG, new neurologist appt and a rehab appt. So hopefully it all goes well.

Everyone is enjoying our baby Isabella.

All the children are busy learning and growing so much every day......

Nicholas is learning counting, adding, reading 1st level stories. He really enjoys school now. He has started Wrestling and is a little shy but is doing really well with learning all they have to teach him.

Andrew is learning more vocabulary everyday and is talking so much. He is very active and eager to learn. He tries hard to use his left hand, little progress every day I guess. He still has so much to work on with the hand/arm but every little bit is progress.

Isabella is happy, smiley and cooing.

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Isabella (November 29, 2011)

Wednesday, 30 November 2011 15:19 | Written by Administrator |

We came home from the hospital today (on her due date) and baby Isabella is doing well. Big brothers Nicholas and Andrew were so excited to see us come home. And they really wanted to hold her

Isabella Paige

7lbs. 3oz. 19inches

November 29, 2011 6:44 pm.

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Happy Thanksgiving!

Tuesday, 22 November 2011 20:11 | Written by Administrator |

Happy Thanksgiving Everyone !!!!

Enjoy this little video Nicholas and Andrew helped me make.

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10/01/2011 update

Saturday, 01 October 2011 08:24 | Written by Administrator |

Andrew has restarted all his therapies for fall. PT 1-2x/week, OT weekly and speech therapy every other week. His therapists have been very impressed with his progress over the summer, especially speech. Andrew has expanded his vocabulary tremendously over the past couple months and says new words daily!

He has been using his left hand (that has very little functioning) on his own a lot. Like grabbing the door knob with 2 hands. Mr. Lefty doesnot help too much, but it is an accomplishment to have that arm over his head and working on a task.

He has the botox injections working still, so he is learning to be able to try use the arm and hand.

Big brother has been a very good therapist for Andrew also. He encouarges him and helps him :)

Big brother has been going to kindergarten which is quite a change for everyone. He enjoys going but it is still tough on him to actually go.

Counting down to our new baby sister, at 31 weeks now. Seems like forever!

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08/04/2011 Update

Monday, 08 August 2011 06:52 | Written by Administrator |

Andrew finally had his botox injections yesterday. He got 4 shots in the left arm muscles. It will take a week to start working and up to a month for the full effect. Then they will last ~4months. We are to stretch his arm muscles for 20-30seconds 2-3 times daily. He did pretty well with the sedation as he needed to be completely out for the shots. We understand they are very painful and how do you hold down a little guy for that many injections.

So time will tell how they work...... we hope for the best :)

He will follow-up with his rehab doctor in ~3 months.

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5/27/2011 update!

Monday, 30 May 2011 07:56 | Written by Administrator |

Andrew had his follow-up last Friday with his neurosurgeon. He said the syrinx (pocket of fluid) in his spine is nothing to "worry" about but we want to watch it closely. It grew 3cm over 1 year, making it 5cm now. They would like to leave it be, just watching unless it causes him problems. It it unrelated to anything else, they do not know the cause of his syrinx. We need to watch for symptoms..... if his ability to walk/balance declines, if he is more irritable (pain related), changes in urinary/bowel function. These can be signs of the syrinx getting larger. He got a "baseline" back x-ray to monitor his scoliosis. This can be caused by the stroke damage (weakness to the left side) or from the syrinx. Andrew will follow-up with neurosurgery in ~6months or sooner if needed, he will have another MRI then and x-ray of the back. His brain scan was unchanged, so he may start getting the MRI/MRA of the brain every couple years to monitor for any potential changes/problems.

He saw his rehab PA/MD also. He will get multiple botox injections to his left arm next month sometime. They will call us when it is scheduled in the Childrens surgery center. He will need to be sedated. The doctor said he would like to take this opportunity to do the injections and not miss out on a critical time for Andrew learning to use the arm. He may get more weakness and that is the risk. But hopefully it will help him to gain more control of the arm and it will be less likely to tighten up and relax back to a "stroke-lie" position I guess you would say. So sometime next month he will get the injections.

Other than that, we got a trampoline the boys can both enjoy with a nice enclosure to keep them safe on it. This will help Andrew with balance and leg strength for example. We encourage him to try and jump. It is a lot of fun :)

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04/27/2011

Wednesday, 27 April 2011 08:59 | Written by Administrator |

I apoligize for not updating sooner... time just slipped away :)

Andrew had his MRI done at the end of March. The syrinx (pocket of fluid) in his spine grew 2cm. It is now ~5cm. Per the neurosurgery PA, it is pressing on nerves that could affect Andrew's sensation for urination. It will also cause some scoliosis. Some patients have problems with a small syrinx and no problems with a large syrinx. It is case by case. So we see the Neurosurgeon at the end of May to see what our plan is. Otherwise they will be doing another MRI in 6months to check the syrinx growth.

His neurologist is happy with his with his progress. We increased his anti-seizure medication since he is growing/gaining a little weight. She will see him again in October and do another EEG.

Andrew will also see rehab in May and he may get a botox injection into his left hand/arm. His therapists state this works well and it will allow him to have more control of the hand without tightening up.

Therapy has been going well overall and he is really trying to use his left hand. It is very hard but he puts things into the hand and will try hold on.

Easter went well and we did a lot of visiting. Andrew enjoyed hunting for easter eggs with brother, but as soon as he found an egg with a treat in it, he did not need to find more eggs!!! So brother got to enjoy finding lots of easter eggs :)

Big brother had some excitement recently when he lost his first tooth :)
The boys are both excited with the weather getting a little nicer, so they can play outside more.

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3/16/2011

Wednesday, 23 March 2011 10:54 | Written by Administrator |

Today marks "2" years since Andrew's aneurysm ruptured...... and he goes to Children's Hospital for appts in ~2 weeks.

He has been having some great therapy sessions. He attempted many times yesterday to include his left hand. It does not do much but he makes the effort! He opened the hand to try hold a soft ring, but then did not know what to do next, so he used his right hand to take the ring and put it on the rod :) So little progress. His therapists can't get over how interested he is in the task and try.

Nicholas celebrated his 5th birthday last month. He has been very helpful in encouraging little brother :)

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